Opening A Discussion On Severe Mental Illness

[Charlie]

For those who disagree that involuntary treatment should not be a priorty --

 

If she had been treated, even involuntarily committed, those 5 people would be alive today. Whose rights are more important (her right to freedom/not treatment or their right to live)???  

 

Interesting thought experiment here. Do you mind if I play devil's advocate? Assuming this person had exhibited violent behaviors in the past, why was she not given adequate care to prevent future episodes? Assuming she didn't exhibit violent behaviors in the past, how does one determine who is most likely to do so in the future? What risk behaviors warrant required treatment? Assuming certain behaviors increase risk of violent behaviors against others, do we stop with mental health or pursue other risk behaviors? For example, it would appear that identifying as a white nationalist is the most common marker in an act of terrorism in the US, followed by (if not in conjunction with), being Christian. Should people be involuntarily treated for dangerous personal beliefs if those beliefs and behaviors (ie, rants and threats on social media) create a positive correlation with violence against others?

[Charlie]

And--what about her right to a functioning brain--which would require treatment, involuntarily if necessary.

 

There need to be serious safeguards, but one big difference between our time and the institutions of a couple of generations ago is that we do now have a lot of decently effective treatments. For many people, inpatient treatment would only need to be temporary in order to get them sufficiently stabilized to manage continuing outpatient treatment, with a brain functional enough to make rational decisions.

 

Breaking down the stigmas surrounding mental health problems and treatments is a necessary component of developing a more effective system. Personally I would like to see the distinction between "mental health/illness" and other health/illness go away. We have more than enough data at this point to acknowledge the physiological reality of illnesses that impact the brain. We don't separate out illnesses of other organs in the same way.

 

Right? And yet rather than recognizing the brain's health to operate on the same spectrum as every other organ health, we as a society assume the mind (which is the function of the brain) is in charge unless something goes really, really wrong. This goes against the information we have, but not against the reality we assume to have, or the beliefs we want to have. I think until we as a society are willing to accept that sometimes facts don't back up our beliefs, we'll have this conflict. Until then, we're at the mercy of those who authorize the distribution of funds.

 

[nrg]

We have an adult son with mental illness. He is functioning very well right now, but has a troubled history. He says that if there were a way for him to sign the rights to medical decisions over to us, his parents, if he should face another mental health crisis while he were still mentally healthy he would do it. He has taught us to notice early signs and to be aware of his functioning so he does not "fall off the cliff" again. During his crises, we were astonished by the large numbers of young adults facing mental health challenges, ill enough to be unable to make decisions in their own best interests, while legally unable to enlist the help of their parents.

 

I have a friend whose schizophrenic son would forget to take meds and then be too ill to take meds, commit a crime and end up incarcerated, over and over again. He begged for his parents to be able to authorize meds for him, to no avail.

 

Yes, I can foresee the issues with assigning rights like this. However, I also see the tragedy of our young adults with no place to turn.

[SparklyUnicorn]

Interesting thought experiment here. Do you mind if I play devil's advocate? Assuming this person had exhibited violent behaviors in the past, why was she not given adequate care to prevent future episodes? Assuming she didn't exhibit violent behaviors in the past, how does one determine who is most likely to do so in the future? What risk behaviors warrant required treatment? Assuming certain behaviors increase risk of violent behaviors against others, do we stop with mental health or pursue other risk behaviors? For example, it would appear that identifying as a white nationalist is the most common marker in an act of terrorism in the US, followed by (if not in conjunction with), being Christian. Should people be involuntarily treated for dangerous personal beliefs if those beliefs and behaviors (ie, rants and threats on social media) create a positive correlation with violence against others?

 

I wonder the same.  Not an easy thing to do (determine if someone is going to be violent).  My parents were rarely violent.  If they did anything worrying in that department, it was directed at themselves and not other people.  HOWEVER, if someone approached them in a threatening way (say in a hospital) and they do approach you in a threatening way a lot. they would lash out.  So of course that spirals out of control.  Any sane normal mentally healthy person could react in that way in that circumstance, but of course the person with the mental illness is just dangerous and acting abnormally. 

[TechWife]

We have an adult son with mental illness. He is functioning very well right now, but has a troubled history. He says that if there were a way for him to sign the rights to medical decisions over to us, his parents, if he should face another mental health crisis while he were still mentally healthy he would do it. He has taught us to notice early signs and to be aware of his functioning so he does not "fall off the cliff" again. During his crises, we were astonished by the large numbers of young adults facing mental health challenges, ill enough to be unable to make decisions in their own best interests, while legally unable to enlist the help of their parents.

 

I have a friend whose schizophrenic son would forget to take meds and then be too ill to take meds, commit a crime and end up incarcerated, over and over again. He begged for his parents to be able to authorize meds for him, to no avail.

 

Yes, I can foresee the issues with assigning rights like this. However, I also see the tragedy of our young adults with no place to turn.

Can you seek guardianship? I don't know what the qualifiers would be in your state, though.

[Anne in CA]

For those who disagree that involuntary treatment should not be a priorty --

 

If she had been treated, even involuntarily committed, those 5 people would be alive today. Whose rights are more important (her right to freedom/not treatment or their right to live)???  

The damage done by homeless mentally ill people to all society is tremendous, it would be much easier for society to institutionalize mentally ill people. The real trouble is that there would never be enough compassionate workers and health care professionals to take care of them. A certain number of people go into the care fields to exercise power over other people. I learned this as a young person when my oldest needed some sign offs from the system. I found a certain number of people who should have been helping people were getting their rocks off by hurting people and in a state as small as Oregon those few people really were jamming up a whole government agency and hurting a lot of people on purpose. I can totally see what kind of people would want to be in charge of the mentally ill if we were doing larger scale institutionalization in this country. It's not pretty. The mentally ill would suffer.

 

But they suffer now. Homeless camps are a mess of disease and suffering. There is rampant crime in the camps, they are full of trash looted from the grossest places. In the closest metro area to where I live there have been many, many bodies found and no one knows who they are, what they died for. Was it natural causes or murder? I had a policeman in my sandwich shop talking on the phone when he thought I couldn't hear him. He was saying something like, "The vertebrae they found this morning are definitely human but we told reporters they were from a large dog. We had seven bodies this week. We can't handle the press if they know it."

 

People who think mentally ill people are better off on the streets than in institutions are probably in denial of how bad the streets really are. But there is no way that most of them would be cared for respectfully in institutions. The best thing for a mentally ill person is to have a family that will make sacrifices to keep them medicated and living at home. But for a lot of reasons that isn't possible for most mentally ill people.

[Reefgazer]

I am asking you this because you seem to be knowledgeable about psychiatric cases, but I welcome an answer from anyone who knows:  Is schizophrenia ever curable or is it just treatable? 

One of the major problems is accessibility. Even if people wanted treatment, often it simply isn't available. There is a shortage of psychiatric beds and practitioners. There is a severe shortage of funding. As a society, we simply aren't doing a good job of taking care of our most vulnerable citizens. Ideally, there should be safe places for a non-compliant mentally ill person to live. There should be a real safety net, not just a reliance on the mercy of a patched together network of homeless shelters and then, sometimes prison. 

 

It's just my observation, but I think often we confuse our desire to see people behave the way we want them to behave (in a "moral" manner) with the moral obligation to provide food, shelter, clothing and care. Our care for others shouldn't be dependent upon circumstances beyond anyone's control, such as mental illness. 

 

[maize]

This. The idea that the brain is unaffected by other systems will be left on the ash heap of medical history and that day can't come soon enough. Unfortunately, I do think there is also too much separation of illnesses of other organs, too much specialization in medicine and not enough big picture.

 

When I hear things like "well, we treat ocd as ocd, and strep as strep," and in the next breath, smugly, "we practice evidence-based medicine," what I really hear is "our practice is so. last. century. and we're proud of it!"

Yes, more integrated medicine would be helpful in many fronts. I do think though that with mental health the separation is so much more severe--it is treated in many ways as completely separate from health of the body. As if the brain is not part of the body?!?

[MotherGoose]

We have an adult son with mental illness. He is functioning very well right now, but has a troubled history. He says that if there were a way for him to sign the rights to medical decisions over to us, his parents, if he should face another mental health crisis while he were still mentally healthy he would do it. He has taught us to notice early signs and to be aware of his functioning so he does not "fall off the cliff" again. During his crises, we were astonished by the large numbers of young adults facing mental health challenges, ill enough to be unable to make decisions in their own best interests, while legally unable to enlist the help of their parents.

 

I have a friend whose schizophrenic son would forget to take meds and then be too ill to take meds, commit a crime and end up incarcerated, over and over again. He begged for his parents to be able to authorize meds for him, to no avail.

 

Yes, I can foresee the issues with assigning rights like this. However, I also see the tragedy of our young adults with no place to turn.

It's wonderful that your son has enough insight into his mental illness and trust in you to say this.

[Liz CA]

Having worked with people like the young man you described, I am also in favor of some involuntary treatment. At least for a restricted amount of time to possibly stabilize the person and reevaluate.

Where I am, conservatorship is the one way to accomplish this with people over 18.

I have seen what can happen when people with schizo, paranoia, or even just schizo-affective disorder (can be minor and is treatable) do not receive treatment. One man was a registered s*x offender because he urinated on some bushes near a school. He had nowhere else to go since he was homeless and I am fairly certain he did not think about being too close to a school.

 

Someone else was having a bad episode in public (persecutory delusional paranoia) and police came. The officers did not know what they were dealing with (after all they are trained in law enforcement, not mental health) and tried to talk to him. This did not go well, of course since he could not string coherent words together. They thought he was either stoned out of his mind or faking it. It ended with a dramatic "overpowering by force" of a person who was harmless. I am not blaming officers here since they were just trying to remove him from the public place where other people were afraid of him because of the bizarre behavior.

 

These issues will likely remain difficult to sort out. Overall awareness helps. We started training our small police force locally to recognize some symptoms and to hopefully avoid future traumatizing events and officers have been given contact names and numbers when they are in doubt. This is possible because it's a relatively small community here (right around 100,000 pop).

[MotherGoose]

I am asking you this because you seem to be knowledgeable about psychiatric cases, but I welcome an answer from anyone who knows: Is schizophrenia ever curable or is it just treatable?

Not Tèch wife, but I worked in mental health and did internships in psychiatric hospitals. Schizophrenia is not curable, in my knowledge or experience. It may get better, but as far as someone who truly has schizophrenia healing to the point they no longer need meds, no. There are conditions that may mimic the symptoms of schizophrenia and be cured, but not true schizophrenia.

 

As far as treatment for the severely mentally ill...I think that ideally, a combination of community based treatment and meds is best. You can walk into any ER and present as suicidal and be admitted involuntarily. Danger to yourself via self neglect due to mental illness is much harder. I remember people, usually people known to the local police and to the hospital, as people with mental illness, being admitted against their wills because they were living on a public beach, or saying they could take care of themselves even though the only source of heat was the open oven door. Sometimes their families would call the police again and again before they could get enough information to legally commit them, even though everyone knew they needed to go. I used to write assessments to commit people to the hospital (or not).

 

Delusions and hallucinations are so incredibly real to Folks with mental illness in ways those who aren't mentally ill or who have never been around it just cannot fathom. You will never talk a mentally ill person out of a delusion. I remember this one lady who was always neatly dressed and carried around her purse. (Many of the patients had to be told to get dressed and bathe). She would seem perfectly normal, until you asked her if the FBI was still after her, and she insisted that they were. She was not in touch with reality at all, but could pull off casual conversation to make you think she was.

 

There's a fine line between personal liberty and safety of yourself and society. I don't really have any answers. I burned out on work in the mental health field. I remember going to the grocery store after leaving work and it taking a bit for me to adjust to the fact that (probably) everyone in the store knew what day it was, and if you asked them a question, they could answer, and that it was okay to turn my back on people because no one was going to throw me through a wall.

 

One agency I worked for had a van and they'd go around to the patients and take services to them. These were state agencies.

 

I feel for folks with mental illness and their families. The new meds do help quite a bit, but yes there are some nasty side effects.

[Reefgazer]

Two years ago at the shelter, we  had a woman who would not lie down to sleep because she insisted a demon was behind the door.  Our pastor had to let her know he was a minister and would take care of it.  But she had these episodes nearly every night and the pastor had to go through the demon-clearing ritual with her every time.

I believe that the descriptions of demon possession, in the Bible, are actually descriptions of schizophrenia. That is exactly what it is like. Or sudden alien abduction/mind control.

And if a person's body was being possessed by a demon/alien, who was controlling the mouth and making it say that it didn't want help, who would stand by and do nothing?!

 

[Reefgazer]

It would seem that group "halfway houses", fairly small and not "institution-like" might be a way to start, and have these group homes supervised by a small team of professionals.

The damage done by homeless mentally ill people to all society is tremendous, it would be much easier for society to institutionalize mentally ill people. The real trouble is that there would never be enough compassionate workers and health care professionals to take care of them. A certain number of people go into the care fields to exercise power over other people. I learned this as a young person when my oldest needed some sign offs from the system. I found a certain number of people who should have been helping people were getting their rocks off by hurting people and in a state as small as Oregon those few people really were jamming up a whole government agency and hurting a lot of people on purpose. I can totally see what kind of people would want to be in charge of the mentally ill if we were doing larger scale institutionalization in this country. It's not pretty. The mentally ill would suffer.

 

But they suffer now. Homeless camps are a mess of disease and suffering. There is rampant crime in the camps, they are full of trash looted from the grossest places. In the closest metro area to where I live there have been many, many bodies found and no one knows who they are, what they died for. Was it natural causes or murder? I had a policeman in my sandwich shop talking on the phone when he thought I couldn't hear him. He was saying something like, "The vertebrae they found this morning are definitely human but we told reporters they were from a large dog. We had seven bodies this week. We can't handle the press if they know it."

 

People who think mentally ill people are better off on the streets than in institutions are probably in denial of how bad the streets really are. But there is no way that most of them would be cared for respectfully in institutions. The best thing for a mentally ill person is to have a family that will make sacrifices to keep them medicated and living at home. But for a lot of reasons that isn't possible for most mentally ill people.

 

[Reefgazer]

With guardianship, wouldn't he lose his legal capacity to make contracts, drive, and do all sorts of things?  Would a medical POA work in this case?

Can you seek guardianship? I don't know what the qualifiers would be in your state, though.

 

[TechWife]

With guardianship, wouldn't he lose his legal capacity to make contracts, drive, and do all sorts of things?  Would a medical POA work in this case?

 

Yes, he would loose his ability to act legally in his own behalf (at least in the state where my family member resides). He wouldn't necessarily lose his ability to drive, though.  A medical POA might work, but it's hard to say. There is a huge variance in the way they are used throughout the nation. A POA can also be revoked at any time and it just has to be a verbal revocation, it doesn't have to be in writing. So, if a mental health patient didn't agree with the treatment plan, they could just revoke the POA. 

 

I have a lightbulb moment: 

What if there were an advance directive for mental health care that would allow patients to think through various scenarios and state what type of treatment they would like to receive? Together with a POA it might provide some really good guidance to the treatment team. 

[Lanny]

God bless you and your family for the volunteer work you do there!    With regard to the diagnosis of the 18 year old. I have a Cousin with that diagnosis. Sometimes he was able to cope, work, etc., other times, very horrible episodes.  Not a good diagnosis for anyone to have.  Basically, I share your concerns about state mental institutions, but for some people, they would probably be much better off, if the states still had mental institutions for the severely mentally ill. That is a very controversial topic and I can see both sides of the arguments, for and against.    

[eternalsummer]

We can do it *right* just like we can do other types of emergency health care ethically.

 

Obviously we need creative thinkers to solve this problem, because we can't just go back to the way we, as a society, treated mental illness "before."  It didn't work well. I think we all acknowledge that.

 

But we CAN do it right and save lives if we will only prioritize it.

 

We don't force other types of emergency health care; if you are capable of refusing care you are allowed to refuse care.  Furthermore, a characteristic of many mental health issues is not wanting treatment.  Depressed people often don't want treatment.  Some adults with ADHD don't want treatment.  If you can't be proven to be a danger to yourself or others, what right does someone else have to drug you so that you are more likely to make a different choice about continuing to be drugged?  Where is the line?  And what is to prevent the line from moving further and further out?

[SparklyUnicorn]

We don't force other types of emergency health care; if you are capable of refusing care you are allowed to refuse care.  Furthermore, a characteristic of many mental health issues is not wanting treatment.  Depressed people often don't want treatment.  Some adults with ADHD don't want treatment.  If you can't be proven to be a danger to yourself or others, what right does someone else have to drug you so that you are more likely to make a different choice about continuing to be drugged?  Where is the line?  And what is to prevent the line from moving further and further out?

 

To be honest, barely.  We are barely allowed to refuse care. 

 

I've had some hairy moments.  Wasn't forced perse, but was given a very hard time.  Once had a guy threaten to force me to put on a hospital gown because I didn't want to.  Thankfully a nurse overheard this and came to my rescue.  Now sure I could chalk this up to an individual a-hole, but I think the assumption is people will (and should) always cooperate with whatever care since they showed up to a medical facility. 

 

I'm not a cooperative patient. 

 

But yes I agree.  So long as someone isn't truly a danger to anyone I don't think it is fair to force them into any kind of treatment.  And the treatments are in large part experimental and cause very undesirable side affects.  I know my own family members went on and off medications a zillion times hoping they could manage without them because managing with them isn't a walk in the park. 

[maize]

We don't force other types of emergency health care; if you are capable of refusing care you are allowed to refuse care. Furthermore, a characteristic of many mental health issues is not wanting treatment. Depressed people often don't want treatment. Some adults with ADHD don't want treatment. If you can't be proven to be a danger to yourself or others, what right does someone else have to drug you so that you are more likely to make a different choice about continuing to be drugged? Where is the line? And what is to prevent the line from moving further and further out?

The line should take into account a person's ability to comprehend the world and make a moderately rational decision.

A person with ADHD alone does not have severely impaired mental functioning. A person with depression so profound that they are not eating anything and are spending their days stuck in thoughts of suicide does. A person experiencing severe psychosis such that they are incapable of recognizing reality does.

 

Perhaps we will reach a point where brain scans can assess degree of mental functioning. We rely on our brains to make decisions; when brain function is severely impaired it becomes nonsensical to talk about decision making because that brain has lost the capability to make decisions with any degree of rationality.

 

At that point it can be transformational for someone who does have a functional brain to step in and make care decisions that can lead to restoration of brain function, including reasoning and decision making capacity.

Edited January 11, 2017 by maize

[maize]

Now, if we can improve mental health resources, services, and knowledge significantly we may eventually be able to prevent the majority of situations in which brain function is so impaired that external decision making is necessary. Make it easy and normal for people to manage their mental health proactively.

[regentrude]

. Schizophrenia is not curable, in my knowledge or experience. It may get better, but as far as someone who truly has schizophrenia healing to the point they no longer need meds, no. 

 

What about cases like John Nash?

[SparklyUnicorn]

What about cases like John Nash?

 

How do we know he had schizophrenia?

 

There is currently no chemical test for schizophrenia.  I'd be more convinced if that were the case.

[Janeway]

This is something that really bothers me too. 

 

I think we will not make any advances in helping people until we make advances in how we treat it. I am betting his parents tried to get him treatment but there just were not options. And treatment that is available is still pretty archaic. 

 

If you see him again, try to find out the name of someone....his parents preferably. And call them and let them know he is there. They might be looking for him.

[Anne in CA]

It would seem that group "halfway houses", fairly small and not "institution-like" might be a way to start, and have these group homes supervised by a small team of professionals.

I am not trying to be disagreeable, but I am asking, do you really believe it would be possible to train enough professionals in our lifetimes? I know people who own group homes for low IQ people and they face a horrible uphill battle for reliable workers. I don't know if we could ever get enough people to take care of the mentally ill we now have. If you count all the homeless vets with PTSD as mentally ill I don't think you could EVER have enough workers.

 

I understand that the metro area nearest to me has a disproportionate amount of mentally ill people with almost no care at all available to them so my perspective is probably a little skewed. But I don't see where we could ever get the people to take care of the mentally ill at this point. Especially as the baby boomers get older and need more care and use up the pool of people with enough empathy to do jobs like this. 

[SparklyUnicorn]

This is something that really bothers me too. 

 

I think we will not make any advances in helping people until we make advances in how we treat it. I am betting his parents tried to get him treatment but there just were not options. And treatment that is available is still pretty archaic. 

 

If you see him again, try to find out the name of someone....his parents preferably. And call them and let them know he is there. They might be looking for him.

 

I agree.  Although there have been some improvements with medications.  Way more options now than years ago. 

Heck, for a time, a relatively common treatment (that people probably don't realize was common) was lobotomy.  Which is pretty terrible and does not work.

[regentrude]

How do we know he had schizophrenia?

 

The same way we know that anybody has schizophrenia : being diagnosed by mental health professionals for displaying the hallmark symptoms of the disease.

 

I am not sure I understand the question. How do you know your parents had schizophrenia? I assume because they were diagnosed by a professional in the field?

[Barb_]

My oldest is going to an interview weekend this month for a program that combines a masters in neuroscience with a phd in policy. Her goal is prison reform for the mentally ill. I'm very worried about the chances of success in today's political climate, however. The last 30 years have been horrible and it only looks to get worse as we consider the privatization of prisons.

[TABmom]

Just some information that someone might find helpful- my doc just gave me a test called GeneSight where they analyze your DNA and tell you what meds are likely to work for you. That said, Zoloft was not nearly as effective for me as Effexor and Zoloft was a "green light" and Effexor a "yellow light"

[Anne in CA]

There are many cans of worms opened with involuntary treatment. Families who want to institutionalize the family scapegoat is one. It used to happen more than people think. Cary Grant's own mother was institutionalized by his alcoholic father who didn't want the legal responsibility to support a wife. She was medicated and locked away for many years. Many people on the board have narcissistic relative or two who would get someone locked away like this and never look back.

 

Another thing is that I only know of a couple of people with schizophrenia IRL, but neither of them wants to take medicine no matter how long they have been treated. One friend has a brother who is in his forties and has never been happy about being medicated. He doesn't know where she lives because she wouldn't be safe if he quits taking his meds. Right now he lives in a group home where he is watched while he takes his meds and he has a part time job (perfect for him, he cleans a movie theater, so he can work alone when the theater is closed and he can watch movies for free), but he has NEVER been happy about taking medicine. He has never believed he needs it. He has had violent episodes that have landed him in jail, he would be in prison now without good family who helps him. The last six years is the longest he has gone taking medicine, but even after six years he is unhappy about taking it. He does it to have a place to live, the state he lives in is not hospitable to homeless people. Without family who keeps him taking medicine and off the street he would be dead or in prison. The other person is the husband of someone I went to church with and he is a huge man who she "tricks" into taking medicine. He doesn't believe he needs it, he only does it for her to stay living with her. She keeps a bag packed. If he doesn't take medicine he goes. So are there many mentally ill people who want to take their meds after being proven to them that they need them? I don't think you can prove it to someone who doesn't think clearly.

[SparklyUnicorn]

The same way we know that anybody has schizophrenia : being diagnosed by mental health professionals for displaying the hallmark symptoms of the disease.

 

I am not sure I understand the question. How do you know your parents had schizophrenia? I assume because they were diagnosed by a professional in the field?

 

My argument is if someone appears to have recovered completely from schizophrenia we can't be sure they had schizophrenia in the first place.  No professional worth their salt would claim diagnosing mental illness is perfect and highly accurate.  Sometimes it merely comes down to they have to put something down on paper so the insurance company will pay for it.  It can be a starting point to try treatments.  My mother's diagnosis was changed several times (same with my sister).  Believe me, it's not an exact science at this point.

 

I can believe recovery is possible, but I don't believe we would know it when we saw it based on one case. 

[MotherGoose]

What about cases like John Nash?

 

I'm not familiar with his case.   I was sharing what my experience and education indicates:  that people with true schizophrenia diagnoses, not symptoms of schizophrenia with other causes (ie lots of things can cause psychotic episodes) do not generally get well enough to function without meds.  I'm definitely not saying it never ever happens, just sharing what I observed and was taught in general.  

[regentrude]

My argument is if someone appears to have recovered completely from schizophrenia we can't be sure they had schizophrenia in the first place.  No professional worth their salt would claim diagnosing mental illness is perfect and highly accurate.  Sometimes it merely comes down to they have to put something down on paper so the insurance company will pay for it.  It can be a starting point to try treatments.  My mother's diagnosis was changed several times (same with my sister).  Believe me, it's not an exact science at this point.

 

I can believe recovery is possible, but I don't believe we would know it when we saw it based on one case. 

 

I have just been doing some quick research, and there seem to be a certain percentage of patients who do go in remission without meds.

https://www.newscientist.com/article/2074229-rethinking-schizophrenia-taming-demons-without-drugs/

 

https://www.ncbi.nlm.nih.gov/pubmed/2889376

[SparklyUnicorn]

I'm not familiar with his case.   I was sharing what my experience and education indicates:  that people with true schizophrenia diagnoses, not symptoms of schizophrenia with other causes (ie lots of things can cause psychotic episodes) do not generally get well enough to function without meds.  I'm definitely not saying it never ever happens, just sharing what I observed and was taught in general.  

 

My mother functioned (barely) with meds.  However, I was under the impression it was better than it was.  I remember talking to her not long before she died and it seemed to me that she had come so far with her mental illness.  To the point I did not notice and others wouldn't have noticed.  She told me she suffered from symptoms on a regular basis, but she was able to recognize when a thought/voice/etc. was not real.  So basically she mostly just became highly aware.  She was somewhat unusual in that even at her worst she was high functioning.  Not so high functioning she could hold down a job, but she could take care of herself and us.  It was somewhat problematic when she had to seek treatment because they often focused on stuff like combing your hair, bathing, etc.  A lot of people are in that kind of shape.  But all they had were basically this one size fits all treatment.  So it didn't do much other than give her somewhere to be when she was going through a bad time.

 

Which really just further goes to show that all these various symptoms may have something in common and show patterns, but the diagnoses is not perfect.  The range is rather wide in terms of who they apply the diagnosis to.

[Scarlett]

The scary man I know with PS told me one time when he feels he needs to go to the hospital to get his meds regulated (read start over because he stopped) he hits a cop.  He says that is the fastest way to get into treament.

 

My brother's brother got in trouble with the law (petty stuff) and that is how he ended up in the system.  Otherwise I feel sure he would be homeless, dead or in prison.

[SparklyUnicorn]

I have just been doing some quick research, and there seem to be a certain percentage of patients who do go in remission without meds.

https://www.newscientist.com/article/2074229-rethinking-schizophrenia-taming-demons-without-drugs/

 

https://www.ncbi.nlm.nih.gov/pubmed/2889376

 

Yes, my mother did go into remission.  But not the kind of remission that lets you live a perfectly normal life.  For one thing the medications cause side affects that are extremely debilitating.  You could tranquilize a blue whale with the amount of meds my mother was on.  Who can work like that?  My mother spent most of her time sitting at the kitchen table drinking coffee.  She would sit there for hours.  That's when things were going well for her. 

[MotherGoose]

I have just been doing some quick research, and there seem to be a certain percentage of patients who do go in remission without meds.

https://www.newscientist.com/article/2074229-rethinking-schizophrenia-taming-demons-without-drugs/

 

https://www.ncbi.nlm.nih.gov/pubmed/2889376

 

If that's the case, it's wonderful.  I will never say never!  I'm speaking from my time in state mental health facilities, where most of the patients thought they were perfectly fine (they weren't) and didn't need meds (they did).  I also saw some folks who were psychotic who did overcome it, but their psychosis was due to other factors besides schizophrenia.  I think the outcomes also differ based on whether or not someone has preexisting coping skills and lack of stressors: someone who is near homelessness anyway, who has no functional support system, who is exposed to substance abuse, is going to have more trouble recovering than someone in a pretty functional situation.  ETA I was not the patient, I was a social worker/therapist.

Edited January 11, 2017 by MotherGoose

[SparklyUnicorn]

If that's the case, it's wonderful.  I will never say never!  I'm speaking from my time in state mental health facilities, where most of the patients thought they were perfectly fine (they weren't) and didn't need meds (they did).  I also saw some folks who were psychotic who did overcome it, but their psychosis was due to other factors besides schizophrenia.  I think the outcomes also differ based on whether or not someone has preexisting coping skills and lack of stressors: someone who is near homelessness anyway, who has no functional support system, who is exposed to substance abuse, is going to have more trouble recovering than someone in a pretty functional situation.  

 

LOL...sorry here I am explaining some of this stuff to you.  You know from experience.

[MotherGoose]

My mother functioned (barely) with meds.  However, I was under the impression it was better than it was.  I remember talking to her not long before she died and it seemed to me that she had come so far with her mental illness.  To the point I did not notice and others wouldn't have noticed.  She told me she suffered from symptoms on a regular basis, but she was able to recognize when a thought/voice/etc. was not real.  So basically she mostly just became highly aware.  She was somewhat unusual in that even at her worst she was high functioning.  Not so high functioning she could hold down a job, but she could take care of herself and us.  It was somewhat problematic when she had to seek treatment because they often focused on stuff like combing your hair, bathing, etc.  A lot of people are in that kind of shape.  But all they had were basically this one size fits all treatment.  So it didn't do much other than give her somewhere to be when she was going through a bad time.

 

Which really just further goes to show that all these various symptoms may have something in common and show patterns, but the diagnoses is not perfect.  The range is rather wide in terms of who they apply the diagnosis to

 

 

I agree with you.  Many of the times a functioning patient would be one who could ignore the voices, not one who just no longer heard them.   It's such a difficult disease for everyone.  Hugs to you and your family.  ETA I was not the patient in the facilities, I was a social worker/therapist who got to leave at 5 pm. 

Edited January 11, 2017 by MotherGoose

[MotherGoose]

LOL...sorry here I am explaining some of this stuff to you.  You know from experience.

 

But I've never lived with someone who has schizophrenia.  I got to leave at 5:00.  It's not the same!  You truly have the experience and can say what might help.

[sassenach]

My BIL has schizophrenia, so this has been part of my life for 20 years now. It's an impossible dance between bad enough for involuntary treatment, and well enough to make his own decisions. I met him when he was 15 and he had his first break when he was 19, so I've known him through the whole range of healthy, to completely overtaken by the disease. The only times we've been able to force treatment have been when he's been so out of control that he was arrested for assault (multiple times). Once he's on meds, he becomes lucid enough to be released, then he inevitably decides to go off of meds. Then we start the cycle all over again.

 

It's an awful life. I absolutely have fear for my kids and have pretty much used their uncle as my number 1 weapon against drugs. He was a pretty heavy drug user in high school.

[sassenach]

What about cases like John Nash?

I have to say that A Beautiful Mind was a really bad thing in my world. My BIL took it as basically a green light to go off meds. I tried to point out that Nash nearly drowned his child in that process. Not that Nash isn't a remarkable story (or that he doesn't have the right to choose his own treatment), but that's just not how it generally plays out. BIL ends up assaulting strangers in fast food joints, on the metro, at the park, etc, when he's not on meds.

[katilac]

What about cases like John Nash?

 

 

The same way we know that anybody has schizophrenia : being diagnosed by mental health professionals for displaying the hallmark symptoms of the disease.

 

I am not sure I understand the question. How do you know your parents had schizophrenia? I assume because they were diagnosed by a professional in the field?

 

I think that John Nash was diagnosed with schizophrenia in the very early 1960s, so definitely a lot has changed and a lot has been learned by then. Many kids dx'd with autism now would have been dx'd with infantile schizophrenia in earlier years. 

 

Either way, he spent 30 years of his life suffering. 30 years! In the prime of his life. Whatever worked, it sure wasn't a quick fix, and it doesn't sound 'intentional' - that is, he didn't follow a certain protocol that could be repeated, he just began to get better during a time when he wasn't being treated or medicated (but he was at various times). 

 

He himself said something that intrigues me, that he got better with no medication except for the natural changes in hormones from aging. We already know that age alone pretty much 'cures' many violent criminals. What if it's the same for some mental illnesses? And we don't know, because most schizophrenics wouldn't survive 30 years without the high level of emotional and financial support Nash had? Or because they were labelled criminal rather than mentally ill early on? 

[sassenach]

Yes, at this point all we have is correlation. But a consistent correlation between winter birth and higher schizophrenia rates indicates that something is causing those higher rates. If we can figure out what maybe it is something that can be addressed.

BIL was born in July in Southern California. shrug.

[maize]

BIL was born in July in Southern California. shrug.

The difference in schizophrenia rates between winter and summer births is about 10%--there are plenty of people born in the summer who develop schizophrenia. The overall population rate in the winter is just slightly higher.

 

If we could figure out why, it might teach us something about causes and risk factors in general. In the complex interaction between genes and environment, it would seem that something related to winter birth increases the odds of a person developing schizophrenia.

 

There's a chart here for the northern hemisphere.

 

http://schizophrenia.com/prevention/season.html

[Joyofsixreboot]

I haven't read everything here but this is really raw for me. I would have given anything if my dd was 17 and not just turned18 during her recent hospitalization and continuing mental illness. I think I've come around to believing at least possibly a 3-6 month forced institutionalization as more kind than no treatment. Seventy-two hours is not long enough for anything. I have reasonable insurance but there are simply not enough services anywhere close to us. She is stuck with a newly graduated counselor and a psychiatrist we won't even see until July as the only help we can find. They did at least write a refill for her prescription which seems to be enabling her to drag through the days. Some days just barely. I had no idea how truly next to impossible it is to find help. If you're poor, uneducated, out of touch with reality or just worn down it is out of reach. It makes me very, very sad and very, very angry. I won't even get started on the struggles of the vets I know who are suffering. There is just so much pain.😢

Edited January 12, 2017 by joyofsix

[MaryMak07]

I had severe postpartum anxiety and depression. It was really bad (my midwife said the worst case she had ever see ). I've been pretty open in sharing about it and as a result LOTS of other women have opened up about their postpartum mental illnesses (some anxiety, some depression, some OCD, and two psychosis).

 

I have no mental health history, though there is some in my family (aunts, uncles). I'm so thankful for the help I received and that I'm able to function well most of the time (I take care of my two kids, homeschool, etc). I occasionally have bad anxiety under stress, but it's not unmanageable. I live a "normal" happy life with slightly impaired functioning sometimes. Who knows if that would be the case if I hadn't gotten help.

 

The two women who had psychosis both now have other diagnoses - one schizo-affective disorder and one bipolar. Both function well in that they are active in their churches, take care of their children, etc. But they still live with some symptoms. The one with SA will sometimes see people and things that aren't there but she knows they aren't real. She's super aware and high functioning but it's not "gone".

But she is a friend I had before knowing this and I'd have never guessed without her telling me. We talk regularly, she homeschools her kids, she teaches a co-op class, etc.

[Reefgazer]

I do think it would be an uphill battle, and maybe not in my lifetime, but I think we should start to turn the system around, even if it moves as slowly as the Titanic.  I don't mean just small, personalized homes for the mentally ill, but non-institutional homes for the elderly who need help but not institutionalization.  For the elderly, this could mean encouraging elderly, widowed friends to house-share and change the Medicare rules to allow payments for live-in aides.  For the mentally ill, this should be tackled at the local level where it's easier to cut through bureaucracy, while at the same time working to change the Medicaid rules to allow payments to these localized institutions via block grants.  No, this won't take care of everyone overnight, but it will make a difference to those people who would be able to enter such a living situation. 

I am not trying to be disagreeable, but I am asking, do you really believe it would be possible to train enough professionals in our lifetimes? I know people who own group homes for low IQ people and they face a horrible uphill battle for reliable workers. I don't know if we could ever get enough people to take care of the mentally ill we now have. If you count all the homeless vets with PTSD as mentally ill I don't think you could EVER have enough workers.

 

I understand that the metro area nearest to me has a disproportionate amount of mentally ill people with almost no care at all available to them so my perspective is probably a little skewed. But I don't see where we could ever get the people to take care of the mentally ill at this point. Especially as the baby boomers get older and need more care and use up the pool of people with enough empathy to do jobs like this. 

 

Edited January 12, 2017 by reefgazer

[Reefgazer]

Perhaps this is key to helping patients cope and live with the disease without the bad side effects of medication.

My mother functioned (barely) with meds.  However, I was under the impression it was better than it was.  I remember talking to her not long before she died and it seemed to me that she had come so far with her mental illness.  To the point I did not notice and others wouldn't have noticed.  She told me she suffered from symptoms on a regular basis, but she was able to recognize when a thought/voice/etc. was not real.  So basically she mostly just became highly aware.  She was somewhat unusual in that even at her worst she was high functioning.  Not so high functioning she could hold down a job, but she could take care of herself and us.  It was somewhat problematic when she had to seek treatment because they often focused on stuff like combing your hair, bathing, etc.  A lot of people are in that kind of shape.  But all they had were basically this one size fits all treatment.  So it didn't do much other than give her somewhere to be when she was going through a bad time.

 

Which really just further goes to show that all these various symptoms may have something in common and show patterns, but the diagnoses is not perfect.  The range is rather wide in terms of who they apply the diagnosis to.

 

[zaichiki]

So are there many mentally ill people who want to take their meds after being proven to them that they need them? I don't think you can prove it to someone who doesn't think clearly.

 

My own personal experience with a schizophrenic family member is NO. Emphatically no. For her entire life. Even when she was medicated well and didn't have episodes for months... she never wanted to take the medication.  She was forced and tricked into doing so for her entire life. And yes, it was necessary. Starting in the 1980's she was able to get a time-release injection each month instead of taking oral pills and it was the most amazing blessing for our family. But no, even medicated, she never functioned normally. Medication meant she had very few  violent and irrational outbursts and she wasn't a danger to herself or others.  It meant she could care for herself and have relationships (difficult ones) with family members.  It meant safety (for her and us).

[Reefgazer]

I'm not sure, but in talking to this kid I got the impression that he took advantage of the fact he was 18 and could now make his own choice to go off his meds.  I am gathering that mom or dad made the med decision for him until then, which is might be  how he was able to get through high school.  OTOH, maybe he just had his first episode recently, but I think not because he clearly had had extensive conversations about the disease and medication with his loved ones prior to coming to the shelter.

I haven't read everything here but this is really raw for me. I would have given anything if my dd was 17 and not just turned18 during her recent hospitalization and continuing mental illness. I think I've come around to believing at least possibly a 3-6 month forced institutionalization as more kind than no treatment. Seventy-two hours is not long enough for anything. I have reasonable insurance but there are simply not enough services anywhere close to us. She is stuck with a newly graduated counselor and a psychiatrist we won't even see until July as the only help we can find. They did at least write a refill for her prescription which seems to be enabling her to drag through the days. Some days just barely. I had no idea how truly next to impossible it is to find help. If you're poor, uneducated, out of touch with reality or just worn down it is out of reach. It makes me very, very sad and very, very angry. I won't even get started on the struggles of the vets I know who are suffering. There is just so much pain.😢