Opening A Discussion On Severe Mental Illness

[zaichiki]

Diagnosis of mental illness isn't perfect.

 

I'm uncomfortable with a discussion of involuntary treatment that isn't predicated on hearing from people with mental illness, during times of remission or when symptoms are well controlled. 

I've heard from someone with schizophrenia during times when symptoms were well-controlled.  I'll tell you what she said. She said she was fine.  She had no problems. And it was crazy that she was forced to take medicine she didn't need.  She said we were all horrible to do this to her. (And when she didn't take it, she couldn't separate reality from the hallucinations and did wield weapons. When she was having an episode she had incredible strength. She was a tiny person, thank God... but still other people did get hurt.)

[zaichiki]

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?

This is not a thought experiment.  This is peoples' lives. Do not "play" devil's advocate.  Ask genuine, real, questions -- that you really mean.  Please.  And if you don't mean it, please don't poke. I have no patience for play on this topic.

[maize]

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

I'm pretty sure Sparkly's mom was still on medication when this was going on. Sparkly, please correct me if I am wrong.

 

These medications are used in spite of their side effects because the side effects of not medicating for those with serious illness are much, much worse.

 

The medications we have cannot cure mental illness, but they can help manage it and allow a person to function to one degree or another.

[zaichiki]

Assuming this person had exhibited violent behaviors in the past, why was she not given adequate care to prevent future episodes?

She had care, but medicine and science are not advanced enough to prevent people with Schizophrenia from having future episodes. The doctors don't have the knowledge yet.  The medicines are not good enough yet. Because there is no cure, no magic button. Because life isn't fair. 

[zaichiki]

These medications are used in spite of their side effects because the side effects of not medicating for those with serious illness are much, much worse.

 

The hardest part, though, is that you cannot make someone with Schizophrenia believe that.

[eternalsummer]

Possibly I would be more convinced that we need to forcibly drug people who behave in ways we consider irrational or self-detrimental (note that I didn't say dangerous or injurious to self or others, as that is already a criteria that allows forcible institutionalization) if these same people didn't very often refuse drugs even while on them.

 

My half brother, and from what I understand *many* people with serious psychiatric disorders, decide to stop taking the drugs while they are on the drugs.  To then say, well, if we forcibly drug this person they'll decide to stay on the drugs and will stop being weird and costing society an arm and a leg (an argument to which I am naturally sympathetic, btw) is just not accurate.

 

Plus it just really worries me in terms of slippery slope possibilities.  There are many detrimental behaviors that people have that are not illegal but still cost them productive years of their lives, alienate loved ones, and cost society.  I don't want the government to be able to control all of those behaviors. 

[SparklyUnicorn]

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.

 

I think there are tons of reasons they may stop.  The stigma, the side effects, and the cost come to mind.  Imagine spending every extra dime you make on pills and constantly being broke because of it.  Imagine being so tried that getting out of bed every morning is incredibly difficult.  Imagine having out of control diabetes despite your best efforts because that's a side effect of medications.  Imagine kidney failure.  Really there is no end to the reasonable reasons people may go off their meds.

[SparklyUnicorn]

Side effects are real and can be life-destroying - just in a slower way than the disease. People need to be listened to when they say their side effects are extremely difficult to live with. 

 

I feel like this is the point in the conversation to mention that although mentally ill people can be violent, just as people without a mental illness can be, mentally ill people are generally more likely to be victims of violence than they are to be perpetrators. 

 

Yes.  They cause major health problems.  They can cause extreme fatigue.  They may make driving impossible or dangerous.  That's just the tip of the iceberg.  Who the hell wants to take a drug that does that?  While you are on the drug you might think hey mentally I feel ok, but man this stuff is ruining my life.  Maybe I can go off of it....

[Scarlett]

You know when my dad achieved remission? When he stopped working. But we don't even want to help people with their healthcare let alone support them for their entire lives without them being productive. It's a little bizarre. We will go to extremes to keep someone alive even if they are poor, but we won't do much else. We'll prop your body up, but the rest of it isn't our problem.

This is so true. My brother can look so normal. But throw in any stress and he just can't deal. He was saying some CRAZY stuff to me when his wife was going through chemo and radiation.

 

In some ways if he had SOME work it would probably help him. But it needs to be very flexible.

[SparklyUnicorn]

This is so true. My brother can look so normal. But throw in any stress and he just can't deal. He was saying some CRAZY stuff to me when his wife was going through chemo and radiation.

 

In some ways if he had SOME work it would probably help him. But it needs to be very flexible.

 

Flexible...yes.  My dad did work.  He had an incredibly understanding employer.  He basically could just not come in whenever he couldn't manage it.  They never gave him a hard time.  BUT they did not pay him either (not that I would necessarily expect them to).  So....

[Ottakee]

Mental health is so incredibly tough, esp as you watch your child transition into young adulthood.

 

There is so very early experiments/research on mitochondrial disorders as the basis for some mental health concerns/autism....Not the only cause, but the cause for some people. There is new treatment in the pipeline that malight cure the mitochondrial disorder. If that happens it might cure the mental health issues as well. Lots of bio ethics surrounding this treatment/cure as well.

[maize]

Possibly I would be more convinced that we need to forcibly drug people who behave in ways we consider irrational or self-detrimental (note that I didn't say dangerous or injurious to self or others, as that is already a criteria that allows forcible institutionalization) if these same people didn't very often refuse drugs even while on them.

 

My half brother, and from what I understand *many* people with serious psychiatric disorders, decide to stop taking the drugs while they are on the drugs. To then say, well, if we forcibly drug this person they'll decide to stay on the drugs and will stop being weird and costing society an arm and a leg (an argument to which I am naturally sympathetic, btw) is just not accurate.

 

Plus it just really worries me in terms of slippery slope possibilities. There are many detrimental behaviors that people have that are not illegal but still cost them productive years of their lives, alienate loved ones, and cost society. I don't want the government to be able to control all of those behaviors.

My husband struggles with mental health, not schizophrenia but to a degree that he really is not at all functional without medication. It has taken every ounce of influence I can bring to bear on him to keep him taking medication. He hates taking meds, even when he is rational enough to recognize their benefits. When he has tried to taper off things have gone downhill very, very quickly and his reasoning ability deteriorates frighteningly.

 

He's a good person with nothing but good desires, but truthfully when the disease takes over he becomes a monster, unable to access his own personality. If there were some way to create a legal document that would give me control over his medical care under such circumstances I would jump at the chance, because if he ever does stop taking medication and refuse to go back on he will destroy the life our family has created and very probably end up dead.

 

Not because he will be controlling his own destiny, but because the disease will have stolen from him any power to control it.

 

Honestly, I perceive severe mental illness as a huge, menacing monster out to goble lives--the lives of those directly impacted and of all those who come in contact with them and especially those who love them. We need tools, good tools, to fight the monster. If the primary victim is able to lead that charge, wonderful! But if not then there need to be ways for other people to step in and lead the fight.

 

I almost lost a sister to suicide, fortunately she was still a minor at the time and my parents were able to direct her care. She has made huge strides through intensive treatment and therapy and is now stable and successful in life without medication--that kind of result is much more likely when treatment and therapy begin early.

 

There are no easy answers here, we need 1000x our current level of resources dedicated to really understanding, preventing, managing, and curing illnesses that impact the brain. That is an investment that would ultimately pay off admirably for our nation and the world.

Edited January 12, 2017 by maize

[Bluegoat]

What about cases like John Nash?

 

He's interesting because as far as I understand it, he learned to manage his symptoms. 

 

I've heard a few times that with some people, the symptoms seem to really tone down with age.  That makes some intuitive sense to me, brains of regular people can change with age as well.

[Bluegoat]

Side effects are real and can be life-destroying - just in a slower way than the disease. People need to be listened to when they say their side effects are extremely difficult to live with. 

 

I feel like this is the point in the conversation to mention that although mentally ill people can be violent, just as people without a mental illness can be, mentally ill people are generally more likely to be victims of violence than they are to be perpetrators. 

 

My dad has tried a number of times to go off one of his meds.  Sometimes without supervision and sometimes with it.  I totally understand and even encouradged him to ask his doctor to help him, when the doctor wasn't keen, because I felt that it was affecting his diabetes in a way that wasn't being taken into account..  It also created horrible insomnia.

 

He's an example of someone who seems to have stabilized somewhat mostly because of age.

[Bluegoat]

Possibly I would be more convinced that we need to forcibly drug people who behave in ways we consider irrational or self-detrimental (note that I didn't say dangerous or injurious to self or others, as that is already a criteria that allows forcible institutionalization) if these same people didn't very often refuse drugs even while on them.

 

My half brother, and from what I understand *many* people with serious psychiatric disorders, decide to stop taking the drugs while they are on the drugs.  To then say, well, if we forcibly drug this person they'll decide to stay on the drugs and will stop being weird and costing society an arm and a leg (an argument to which I am naturally sympathetic, btw) is just not accurate.

 

Plus it just really worries me in terms of slippery slope possibilities.  There are many detrimental behaviors that people have that are not illegal but still cost them productive years of their lives, alienate loved ones, and cost society.  I don't want the government to be able to control all of those behaviors. 

 

I think that what seem like contradictory things are actually often held together in these situations.  People are happy to be brought out of the full effect of the illness with medications.  They also, eventually, may stop taking the medications. 

 

It seems like they should be mutually exclusive, but in practice they aren't.  The undedicated state is horrible.  But after a while on the meds, the effects get worse or change, or start to bother them more as they try and function at a higher level, or they see less hope of finding better ones, or they just go through a stressful period and can't hold it together - it takes work to keep taking medications like that.  And they hope that this time, going off the meds will be ok.

 

But - it isn't like this is all the time anyway - lots of people are quite happy to take the meds once they are seeing more clearly.

[wapiti]

Just want to pile onto considering physical causes of neuropsychiatric symptoms.  There seems to be a surprising amount of resistance to looking for physical causes in certain quarters of the medical establishment, though very slowly some connections are being made.

 

I am not familiar with schizophrenia specifically, but for anyone interested, I've come across theories on that disorder ranging from overmethylation (genetically messed up methylation cycle, improved with supplementation) to toxoplasmosis and other types of infections.  The toxo association ought to be fairly well-known by now, but how often are people tested for that?  I bet almost never, because after all, that's too controversial.  There are so many factors, not the least of which may be a role for the particular individual's immune system.

Edited January 12, 2017 by wapiti

[SporkUK]

I'm finding the repeated myth of mental illness = violent I've seen in this thread really disturbing. The ableist rhetoric needs to be stopped - it causes a lot of harm. Many people have been hurt or killed by those without mental illnesses because of this concept. 

 

I think any conversation on this needs to remember that people with mental illnesses are more likely to be hurt by others than to hurt others. Several studies, including from the American Psychiatric Association and the Institute of Medicine, have given very strong evidence of this. We with mental illnesses are more likely to be victims of violence than to be violent. Also, as has been said, lack of access is a major issue - there are far more people fighting for access to care than there are fighting getting care. Yes, there is resistance to care but - as someone with disabilities both physical and mental and personally been involved with multiple disability communities for many years, the gap of resistance between the two is a lot smaller than a lot of people think. A lot of people with physical illnesses avoid medical attention for many reasons - stigma and ableism woven into our cultures and social systems being big ones.  Shall we lock up everyone with chronic pain due to the correlation with that being undertreated and violence? The evidence for it is about as strong as the usefulness of involuntary confinement for those with mental illnesses for improving individual well-being on a large scale. 

 

I am still fully human with all my disabilities and most of us who live with it are very well aware of when it is affecting us especially those who live with it for a while. I have C-PTSD. Mine has elements of depression, anxiety, paranoia including paranoid delusions, executive dysfunction, and so on. I cannot take medication for it because they're all contraindications to other conditions I have [apparently, my being conscious and not having a stroke are considered more important]. I am always very aware that PTSD is causing paranoia which is what is making my mind and body react like someone is breaking into the house to kill us, knowing doesn't stop how they're reacting, I just have to live through it until it passes. I am aware during a panic attack that something that happened 10-15-20-25 years ago cannot be happening now, but I have to live/feel/hear through it again. My spouse, who has schizoaffective disorder, is able to tell his visual and/or auditory hallucinations from reality even when he feels compelled to interact with them, he still has to live through it. I mostly live through it silently as I've been taught to since I started showing signs of it in early childhood. I've been "lost" many times, and in all of those times confinement is the literally the worst thing for me and what I was always taught to do to myself to punish myself for it. 

 

As likely obvious, I'm against involuntary confinement in institutions to attempt to coerce treatment just for having a mental illness, but then I am a person with multiple disabilities who has repeatedly had to face verbal, physical, and on one occasion violent-left-in-a-bed-of-my-own-blood-to-teach-me-some-lesson sexual abuse by medical professionals in medical settings as well as worked with more people who have faced far worse so my trust in all of it is likely a lot less than most people before even getting into the historical and current abuses in general with healthcare systems around the world. The current systems are just not fit for purpose particularly for the marginalized and vulnerable. 

 

I am for reducing stigma and ableism which are major barriers, opening better access with better-trained diverse professionals and more safeguards to remove abusive ones as well as the inclusion of coping techniques and emotional education age appropriately from an early age. I also have wild dreams of better-funded funded research, more peer group therapies which have some of the best results but woefully ignored and underfunded, and more systemic changes within institutions and society at large that pushes so many of us aside. So many parents on here worried about their kids and a lot of it is to do with current structures being built and maintained to silence and profit off of us to death rather than to enable us to care for each other and live. 

Edited January 12, 2017 by SporkUK

[Charlie]

This is not a thought experiment.  This is peoples' lives. Do not "play" devil's advocate.  Ask genuine, real, questions -- that you really mean.  Please.  And if you don't mean it, please don't poke. I have no patience for play on this topic.

 

Forgive me, I was trying to not make it personal but to keep it general. I think many of us have close connections with this topic and getting personal is a bad idea. I think SporkUK is right on the money. While it's understandable to imagine our own experience is pretty universal, the fact is most people with mental illness are victims rather than aggressors. The idea that they ought to be stopped before they do anything dangerous is a frustrating and aggravating double standard every time I hear about an act of violence for ideological reasons. But we don't consider ideological reasons to be precursors to violence - even when the correlation is clear -  like we see mental illness as precursors to violence - even when the correlation is not there. We see what we want to see, incorporating facts that support our beliefs. That's natural, no one does it on purpose, but it's holding us back from our own stated goals of helping loved ones.

Edited January 12, 2017 by Charlie

[SparklyUnicorn]

From my mentally ill inlaw, I get the comment that I deal with stress well, when she is closer to normal. What she rejects is that the mind can be trained to deal with stress....and that means she would have to find something else to do, which means giving up her current identity.

 

 

What I wonder is the effect of food. Suppose the fast food joints get converted to robotic, We change the menu...and we give the ill a card or a fingerprint access that will only allow them free good food.

 

Food?  Really, you think severe mental illness comes down to food?

 

If only it were that simple.

 

My parents had illnesses starting in childhood.  Both came from fairly well off families who had access to good food.  That was back in the day where there wasn't a fast food joint on every corner and 100,000 junk products in the store. 

[Joyofsixreboot]

I understand the desire not to be unfairly institutionalized and the poor care (abuse?) sometimes received BUT when you see your 18 yo dd take down two cops( who granted were trying not to hurt her), escape handcuffs, then become physically violent with me all while arguing her killing herself is no different a decision than choosing a college will leave you feeling institutionalization for a period is not a bad idea.

[gardenmom5]

Forgive me, I was trying to not make it personal but to keep it general. I think many of us have close connections with this topic and getting personal is a bad idea. I think SporkUK is right on the money. While it's understandable to imagine our own experience is pretty universal, the fact is most people with mental illness are victims rather than aggressors. The idea that they ought to be stopped before they do anything dangerous is a frustrating and aggravating double standard every time I hear about an act of violence for ideological reasons. But we don't consider ideological reasons to be precursors to violence - even when the correlation is clear -  like we see mental illness as precursors to violence - even when the correlation is not there. We see what we want to see, incorporating facts that support our beliefs. That's natural, no one does it on purpose, but it's holding us back from our own stated goals of helping loved ones.

 

 

I can agree that *most* (but NOT all) people with mental illness are victims. 

i had two schizophrenics in my family.  (both are now deceased.)

 

one took rx, was harmless but engaged in poor decisions and definitely needed someone watching over them.  they were fairly compliant about cooperating.

 

the other was unmedicated, and . . . aggressive. not "potentially".  he pulled a butcher knife on his mother. (she refused to call the police)  he ripped a phone out of the wall while his sister was calling 911 because he was threatening her. brtw:  that's an automatic lights and siren response, and he spent a few days in jail.   he had NO interest in rx.  he had NO interest in mental health treatment - and his mother tried to get it for him when he was still living under her roof.  the one time she got him to see a mhp - he threatened her to never suggest it again.

I was scared to be around him.  even though he didn't actually injure someone - the potential was most definitely there, to seriously hurt someone.  sometimes - society needs to protect itself.

 

it's all great and wonderful if we can develop better rx - but if a mentally ill person isn't willing to take it (and many won't) - it does *nothing*.

[SparklyUnicorn]

I can agree that *most* (but NOT all) people with mental illness are victims. 

i had two schizophrenics in my family.  (both are now deceased.)

 

one took rx, was harmless but engaged in poor decisions and definitely needed someone watching over them.  they were fairly compliant about cooperating.

 

the other was unmedicated, and . . . aggressive. not "potentially".  he pulled a butcher knife on his mother. (she refused to call the police)  he ripped a phone out of the wall while his sister was calling 911 because he was threatening her. brtw:  that's an automatic lights and siren response, and he spent a few days in jail.   he had NO interest in rx.  he had NO interest in mental health treatment - and his mother tried to get it for him when he was still living under her roof.  the one time she got him to see a mhp - he threatened her to never suggest it again.

I was scared to be around him.  even though he didn't actually injure someone - the potential was most definitely there, to seriously hurt someone.  sometimes - society needs to protect itself.

 

it's all great and wonderful if we can develop better rx - but if a mentally ill person isn't willing to take it (and many won't) - it does *nothing*.

 

It'll never be perfect until they can find a cure OR test for it (which I know is a controversial thing to say). 

[G5052]

nm

Edited August 12, 2017 by G5052

[SparklyUnicorn]

And some have no access to help or the help is very minimal.

 

 

[gardenmom5]

It'll never be perfect until they can find a cure OR test for it (which I know is a controversial thing to say). 

 

 

even if the treatment was perfect, you will have adults mental health patients that will not want to use it.

I have a dear friend whose dss is severely disabled.  they'd love to have something that would help him, and he'd probably use it.  but most people don't want to take anything.   most mentally ill on the street - refuse or are unable to get adequate - treatment.

 

and if they can test for it  - what then?   are you going to force treatment?  what?

[JFSinIL]

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.😢

Here, when ds was in crisis and called up very depressed from three hours away at college, the only way we could get him into a psychiatrist asap was to call our insurance and tell them that he was this side of suicidal and the only in-network doctors had months long waits or simply were not accepting new patients. We were given permission to use whichever doctor we could find whether in-network or not as in network rates (since there was no one available in network to see ds in a timely period they had to do this). So if you can find ANY reputable doc. sooner than July tell insurance you need to use them NOW for dd. Good Luck.

I think it helped the insurance lady i got on the phone was another mom ;-)

 

pardon typos. To many bandaids on fingers (don't ask)

[SparklyUnicorn]

even if the treatment was perfect, you will have adults mental health patients that will not want to use it.

I have a dear friend whose dss is severely disabled.  they'd love to have something that would help him, and he'd probably use it.  but most people don't want to take anything.   most mentally ill on the street - refuse or are unable to get adequate - treatment.

 

and if they can test for it  - what then?   are you going to force treatment?  what?

 

No I meant test potential parents for it (or their potential offspring for it).  Which yes, I know is highly controversial, but honestly I think some mental illnesses are so debilitating I would not want to knowingly put a human through that (unless treatment got a whole lot better).

 

I actually never thought about the fact I could pass mental illness onto my kids.  I'm very afraid of it.

[maize]

When we talk about violence, we need to take into account self-violence--this is by far the most common type among mental health sufferers, and the rates among certain populations are devastatingly high. According to this source, approximately 60% of males with schizophrenia attempt suicide.

 

http://schizophrenia.com/suicide.html#

 

 

I understand all the caution and hesitation regarding enforced treatment, it's not an issue that can ever be clear cut/black and white. Insisting though that folks with mental illness should never be treated unless they choose it for themself strikes me as analogous to suggesting that someone with cardiovascular disease never receive treatment unless their cardiovascular system is already functioning adequately. Because a person with severe mental impairment from disease really cannot make adequate treatment choices that require using the impaired brain.

 

There are of course huge variations among types and degrees of mental illness; the majority of people with some degree of illness are not in fact so impaired that they cannot responsibly make treatment decisions. There remains however an unfortunate minority in whom the impairment is severe.

Edited January 12, 2017 by maize

[SparklyUnicorn]

My dad was much scarier than my mom when out of his gourd.  And she had the more notoriously scary illness.

 

My mother was often treated as potentially dangerous.  She wasn't allowed to do certain things in some circumstances.  She was understanding about it.  It stinks, but it is what it is.  Like once she wanted to drive a bus as a part time job.  They wouldn't hire her.  That sort of thing.

 

 

[SparklyUnicorn]

I would never insist on that.

 

I do think involuntary treatment needs to be a last resort, and that time, money and attention would be better spent on trying to make sure we get to 'last resort' as few times as possible over the course of someone's illness/life.

 

We also need to hear from the mentally ill on their experiences of involuntary admissions to hospital. And not assume that once they are there, things are hunky dory, because they too often are not. We need to understand that many factors, including the socio-economic, play a role in this area. 

 

It's a very murky area, and additionally we need to understand the history of such admissions. Involuntary admission has historically been misused and abused. 

 

Self-violence and suicide is indeed a huge concern...one wonders what percentage of cases are helped or hindered by involuntary treatment. 

 

Yeah like the guy described in this thread.  Since when is there a rule against being off the wall?  Off the wall isn't equal to dangerous. He wanted some meat.  And actually I think his reasoning isn't necessarily off.  Just most people don't express themselves in such a way. 

So what, we should lock him up because he kept asking for meat?  You gotta do something actually threatening. 

[gardenmom5]

When we talk about violence, we need to take into account self-violence--this is by far the most common type among mental health sufferers, and the rates among certain populations are devastatingly high. According to this source, approximately 60% of males with schizophrenia attempt suicide.

 

http://schizophrenia.com/suicide.html#

 

 

I understand all the caution and hesitation regarding enforced treatment, it's not an issue that can ever be clear cut/black and white. Insisting though that folks with mental illness should never be treated unless they choose it for themself strikes me as analogous to suggesting that someone with cardiovascular disease never receive treatment unless their cardiovascular system is already functioning adequately. Because a person with severe mental impairment from disease really cannot make adequate treatment choices that require using the impaired brain.

 

There are of course huge variations among types and degrees of mental illness; the majority of people with some degree of illness are not in fact so impaired that they cannot responsibly make treatment decisions. There remains however an unfortunate minority in whom the impairment is severe.

 

then there will need to be changes to the law.

it is notoriously difficult to get someone involuntarily committed, and even more difficult for forced rx.  even mentally ill people who have committed serious crimes can frequently refuse rx.

[Harriet Vane]

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.

 

I have not read the thread, and I will admit to some ignorance in this area.

 

But can't you simply put in place medical power of attorney?

 

:grouphug:

[gardenmom5]

I have not read the thread, and I will admit to some ignorance in this area.

 

But can't you simply put in place medical power of attorney?

 

:grouphug:

 

poa is meant to be used when a person is "incapacitated".  drs have to agree the person is incapacitated and the poa can make decisions.  in a crises moment - that's not hard.  long-term, that is much more difficult.  much more difficult.  even for someone not in their right mind due to mental illness or dementia it is difficult to assign permanent poa decision making. it is a court proceeding.

[G5052]

I have not read the thread, and I will admit to some ignorance in this area.

 

But can't you simply put in place medical power of attorney?

 

:grouphug:

 

nm

Edited August 12, 2017 by G5052

[MercyA]

No I meant test potential parents for it (or their potential offspring for it).  Which yes, I know is highly controversial, but honestly I think some mental illnesses are so debilitating I would not want to knowingly put a human through that (unless treatment got a whole lot better).

 

I agree with the vast majority of what you've said in this thread, but this type of sentiment frightens me. If parents want to be tested for genetic predisposition to mental illness and decide not to have children because of it, that's up to them. But I do worry about things like forced sterilization of people who are mentally ill or abortion of children who are found to be potentially predisposed to mental illness.

Edited February 14, 2017 by MercyA

[Upward Journey]

Sorry in advance that this is lengthy, but this has been eating at me this past week...

 

Every year, my kids and I work at a homeless shelter in January - cleaning, cooking meals, being overnight monitors for the shelter, etc...  Monday after serving dinner I sat down to visit with the guests, and one young man caught my eye because he stuck out like a sore thumb - pacing like a trapped animal, very young (17/18, I guessed; at the outside 20), very handsome and in good physical shape, clean clothes, and he did not have that beaten down look that so many have.  So I tried to start a conversation, and the only thing he wanted was "Meat, good bloody meat."  I told him we were completely out of meat (we were, although he didn't believe me), but I offered him other food, which he rejected, saying he needed protein.  So I offered PB + J or a cheese sandwich, but he was having none of it, he wanted "clean" protein.  So I figured, given his decent physical shape, he was probably an athlete in high school or recently in high school, or that he was a body builder and wanted his protein for that, so I offered up scrambled eggs.  Nope, he wasn't interested in that, but he did ask for eggs whites, raw, which he rejected as having been contaminated by the yolk.  Anyway, I asked him why he wasn't sleeping and he said he couldn't because he needed meat.  So I suggested he at least sit down and rest, and I chatted him up, or rather tried to.  But conversation was impossible because as I was trying to talk to him, he was holding 2 separate conversations with imaginary people who were obviously part of his recent past.  His attention would bounce from me to imaginary person 1 and on to imaginary person 2 and so on.  When he was conversing with "us", the conversations were very short and sometimes one of my questions were followed by a completely non-sense answer, and sometimes I got a decent snippet of conversation out of him.  I did learn that he was 18 and recently attended a local high school, where he was on the basketball team.  He apparently had a girlfriend who broke up with him because she told him he needed to see a doctor for his schizophrenia, which he refused because "he didn't have that."  One breath later, he tells me his head isn't right, and that I must be working for his girlfriend who tried to get him to take medication, because I work at the same place as his girlfriend's mother, so clearly, she put me up to working him over.  Anyway, someone at the shelter told me his symptoms were of schizophrenia, and I realized this kid has an entire life to live and here he was out on the street with no one to care for him, in the heavy snow and bitter cold that southern Virginia got this past weekend.

 

I looked at that kid and I didn't know what to do for him; I don't think he can be helped unless he gets treatment.  There is no way he could hold a job and rent an apartment; he can't even hold a conversation for more than 30 seconds.  Which brings me to what I have been pondering for a while:  Involuntary treatment for the mentally ill.  I have mixed feelings about this.  On one hand, I would not want treatment forced on me, and having the government force someone into medical treatment is disagreeable to me.  OTOH, his life is lost if he doesn't get treatment. 

 

The week at the shelter wasn't all bad, though.  I met a person who grew up in my hometown and graduated the same year as me, but from a different school.  We had common memories of swimming at the lake, shopping at the local mall, and so on that we talked about.  When I moved to NYC, by coincidence so did he.  When I moved from NYC, he did as well, to the same town where I moved!  And then, when the Navy brought me here to Norfolk, VA, the Navy brought him here, as well.  We both met our spouses in the same way (we each went to the same high school as our spouses, but got together with them years after high school).  And here we were, by coincidence, in the same shelter in Virginia!  It was an amazing coincidence!  Then there was the 60-something man who had just been released into a bitter cold snow and blizzard from a 5-day hospital stay after having suffered a heart attack.  The guy had no hat, no gloves, no coat that zippered, and the hospital released him!  WTF?  But he had a good outcome - his medical condition sent him to the top of the list for housing, and he will be leaving the homeless shelter by tomorrow.

 

ETA:  I'm not sure what the point of my post is, except to maybe discuss treatment for the severely mentally ill.  But I wanted to get this off my chest anyway.

 

I know I'm jumping in here late, and I haven't read the discussion that follows, but this makes my heart hurt :(

[Reefgazer]

Actually, it wasn't the meat that alarmed me; your run of the mill bodybuilder would likely want that. What alarmed me most was the fact that he was incapable of holding a job or tending to basics and was out on the street with no one to care for him in brutal winter conditions. That, and the fact there was nothing I could do to make his situation better.

 

Yeah like the guy described in this thread. Since when is there a rule against being off the wall? Off the wall isn't equal to dangerous. He wanted some meat. And actually I think his reasoning isn't necessarily off. Just most people don't express themselves in such a way.

So what, we should lock him up because he kept asking for meat? You gotta do something actually threatening.

[maize]

As far as I know no mental illness is 100% genetic in nature--twin studies tend to show a genetic contribution, so if one twin has, say, schizophrenia there is a much higher probability that the other (genetically identical) twin will also develop it than the probability of a random person in the population developing it, but it is not a 100% certainty; half or more of those with an identical twin who develops schizophrenia never develop it themselves. The correlation is lower for many other mental health conditions. It is not as simple as "you have x gene, you will develop y disease."

Edited January 13, 2017 by maize

[Reefgazer]

I had POA for my dad (he died of dementia related illness), and have POA now for my mom. Neither has/had to be incapacitated for me to act. For example, I am allowed to sign documents and tend to moms bills just because it's easier for me to do so. I also didn't need court action; just a lawyer to sign off on POA in front of a witness. But this may vary by state.

poa is meant to be used when a person is "incapacitated". drs have to agree the person is incapacitated and the poa can make decisions. in a crises moment - that's not hard. long-term, that is much more difficult. much more difficult. even for someone not in their right mind due to mental illness or dementia it is difficult to assign permanent poa decision making. it is a court proceeding.

Edited January 13, 2017 by reefgazer

[maize]

I had POA for my dad (he died of dementia related illness), and have POA now for my mom. Neither has/had to be incapacitated for me to act. For example, I am allowed to sign documents and tend to moms bills just because it's easier for me to do so. I also didn't need court action; just a lawyer to sign off on POA in front of a witness. But this may vary by state.

Power to sign documents and pay bills is very different from power to check someone in to a hospital against their will.

Edited January 13, 2017 by maize

[gardenmom5]

are you doing anything to which she objects?  or do you have her support?

is she out of it?

those all change things.

 

I could give medical decisions while she was unconscious in the hospital.  we could access her bank accounts, etc.  (though that was set up previously), but to go against any stated wish of her own (conscious, living in a care center, able to speak, etc.  long-term),  - even when in her best interest - would require a lot more than a simple mpoa.

 

I had POA for my dad, and have POA now for my mom. Neither has/had to be incapacitated for me to act. For example, I am allowed to sign documents and tend to moms bills just because it's easier for me to do so. I also didn't need court action; just a lawyer to sign off on POA in front of a witness. But this may vary by state.

 

[Reefgazer]

Here's the interesting thing, though...when dad was hospitalized, even though he could walk, talk, and converse intelligently (his dementia wasn't obvious, and was unknown to doctors for a while because he didn't have much of a medical history), the docs came to me or my mom when deciding how to care for him, solely because he was deaf and it was difficult to communicate with him verbally. Once the doc knew that mom was turning over all decision making for him to me (and this was life or death matters, not trivial crap like whether he should get an antibiotic), the docs called me - not mom, not dad - and asked me what *I* wanted to do. The docs never knew I had POA for dad and I just used it for financial matters, but they followed my instructions neverthless, no documentation of any kind required. So, yeah, a POA would have been sufficient here, unless one of my siblings decided to make a stink about my decisions. And yes, I was the person who initially "tricked" dad into going to the hospital because he didn't want to go. He got admitted, no paperwork on my part required.

 

hquote name="maize" post="7389845" timestamp="1484273523"]

 

Power to sign documents and pay bills is very different from power to check someone in to a hospital against their will.

Edited January 13, 2017 by reefgazer

[Reefgazer]

Mom is with it, and I would never do anything without running it by her. But the POA gives me license to act on her behalf "when she is unable" to do so - there are no constraints or caveats as to what that means, so presumably, I could act on her behalf if she were incapacitated. I did so when dad was alive with him and so ill that he really could no longer manage his affairs, and I did so without the hospital requiring documentation of any kind. Honestly, that did kind of surprise me. .

are you doing anything to which she objects? or do you have her support?

is she out of it?

those all change things.

 

I could give medical decisions while she was unconscious in the hospital. we could access her bank accounts, etc. (though that was set up previously), but to go against any stated wish of her own (conscious, living in a care center, able to speak, etc. long-term), - even when in her best interest - would require a lot more than a simple mpoa.

[zaichiki]

I agree with the vast majority of what you've said in this thread, but this type of sentiment frightens me. If parents want to be tested for genetic predisposition to mental illness and decide not to have children because of it, that's up to them. But I do worry about things like forced sterilization of people who are mentally ill or abortion of children who are found to be potentially predisposed to mental illness.

 

I have severe OCD, but I am not my mental illness, you know? I don't think it's for anyone else to judge if I would be better off not bearing children or better off dead. 

 

I think you have to keep in mind that these are the thoughts of a child of someone diagnosed with Schizophrenia... can you imagine what it's like to live a childhood like that? (No offense meant SparklyUnicorn.) I'm not saying everyone with mental illness should not be born, etc., but I really want those of you who have *not* been raised by a *severely* mentally ill parent to stop for a minute before commenting and TRY to put yourselves in another person's shoes. I will make a blanket statement: being raised by a parent with Schizophrenia affects you for the *rest of your life.* Please be gentle with children of severely mentally ill parents. *I* was blessed to have family members who did not have mental illness who could sometimes be there for me when I needed help. Sometimes. This is a childhood I wouldn't wish on my worst enemy. Unless you lived years and years with someone who abused you regularly you cannot come close to understanding the pain. (And I don't mean *you*, MercyA, but a generic "you.")

[zaichiki]

Possibly I would be more convinced that we need to forcibly drug people who behave in ways we consider irrational or self-detrimental (note that I didn't say dangerous or injurious to self or others, as that is already a criteria that allows forcible institutionalization) if these same people didn't very often refuse drugs even while on them.

 

My half brother, and from what I understand *many* people with serious psychiatric disorders, decide to stop taking the drugs while they are on the drugs.  To then say, well, if we forcibly drug this person they'll decide to stay on the drugs and will stop being weird and costing society an arm and a leg (an argument to which I am naturally sympathetic, btw) is just not accurate.

 

Plus it just really worries me in terms of slippery slope possibilities.  There are many detrimental behaviors that people have that are not illegal but still cost them productive years of their lives, alienate loved ones, and cost society.  I don't want the government to be able to control all of those behaviors. 

I do *not* believe that forcibly medicating the severely mentally ill will make them decide to stay on the drugs and "stop being weird."  This is not about weirdness.

 

This is about safety for themselves and innocent others around them AND their ability to care for themselves and lead as close to a life as possible. Mentally ill people should not be on the street, unsheltered, unsafe from many dangers, and unhealthy (lack of appropriate food and medical care, etc.) just because their mental illness makes them unable to agree to treatment. They are not really making a choice like someone without a severe mental illness is capable of making a choice... they may say the words and they may act as though they don't want treatment, but it is because their *brains are sick* and *they cannot understand the consequences to themselves and sometimes, others.*

[zaichiki]

Honestly, I perceive severe mental illness as a huge, menacing monster out to goble lives--the lives of those directly impacted and of all those who come in contact with them and especially those who love them. We need tools, good tools, to fight the monster. If the primary victim is able to lead that charge, wonderful! But if not then there need to be ways for other people to step in and lead the fight.

[zaichiki]

I think that what seem like contradictory things are actually often held together in these situations.  People are happy to be brought out of the full effect of the illness with medications.  They also, eventually, may stop taking the medications. 

 

It seems like they should be mutually exclusive, but in practice they aren't.  The undedicated state is horrible.  But after a while on the meds, the effects get worse or change, or start to bother them more as they try and function at a higher level, or they see less hope of finding better ones, or they just go through a stressful period and can't hold it together - it takes work to keep taking medications like that.  And they hope that this time, going off the meds will be ok.

 

But - it isn't like this is all the time anyway - lots of people are quite happy to take the meds once they are seeing more clearly.

Lots of people with schizophrenia are quite happy to take the meds once they see more clearly?  Or are you talking about other forms of mental illness?

[gardenmom5]

Mom is with it, and I would never do anything without running it by her. But the POA gives me license to act on her behalf "when she is unable" to do so - there are no constraints or caveats as to what that means, so presumably, I could act on her behalf if she were incapacitated. I did so when dad was alive with him and so ill that he really could no longer manage his affairs, and I did so without the hospital requiring documentation of any kind. Honestly, that did kind of surprise me. .

 

 

I've btdt with a mpoa with my mother's dr.  some are more willing to go with it than others.

[zaichiki]

I'm finding the repeated myth of mental illness = violent I've seen in this thread really disturbing. The ableist rhetoric needs to be stopped - it causes a lot of harm. Many people have been hurt or killed by those without mental illnesses because of this concept. 

*I* am referring strictly to schizophrenia. Many people with schizophrenia can be violent *when having an episode.*   It's not *them* it's the schizophrenia.  They are not in control when they are having an episode.

 

So what if we can prevent most of the episodes? So they and others can be safe. Should we *not* do it?  

 

From my perspective, as someone who is not mentally ill, I find it interesting that we have, in the American legal system (and presumably others) a "get away with it clause." If one is found severely mentally ill, one cannot be found guilty of a crime (including murder) because one had no control over one's actions. If that is the case, then the general public has every right to keep themselves safe, don't you think? I'm *not* advocating for harming or killing those with mental illness.  Duh. I'm saying that we cannot say, on one hand, that these many, many people did these horrible things because they were not in control *while on the other hand* saying that we can do nothing to stop it.  We *can.* We can make sure treatment is undertaken in order to keep people safe, even if it means they do not agree. Because the alternative, many (not all. never saying all) times is that innocent people will be hurt (including the severely mentally ill person, themselves).

 

How can *we* as able-bodied, able-brained people sit by and let that suffering happen?

[MercyA]

I think you have to keep in mind that these are the thoughts of a child of someone diagnosed with Schizophrenia... can you imagine what it's like to live a childhood like that? (No offense meant SparklyUnicorn.) I'm not saying everyone with mental illness should not be born, etc., but I really want those of you who have *not* been raised by a *severely* mentally ill parent to stop for a minute before commenting and TRY to put yourselves in another person's shoes. I will make a blanket statement: being raised by a parent with Schizophrenia affects you for the *rest of your life.* Please be gentle with children of severely mentally ill parents. *I* was blessed to have family members who did not have mental illness who could sometimes be there for me when I needed help. Sometimes. This is a childhood I wouldn't wish on my worst enemy. Unless you lived years and years with someone who abused you regularly you cannot come close to understanding the pain. (And I don't mean *you*, MercyA, but a generic "you.")

 

Yes, of course. I know Sparkly went through extreme difficulties in her childhood. I hope she knows I am very sympathetic towards her and towards all families who have to deal with mental illness.

 

I do feel in these discussions it is important to keep basic human rights in mind as we talk through possible solutions. However, thank you for the reminder to speak gently and circumspectly. That is always a good thing to do.