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August 27, 2009 4:28 PM Subscribe

In the discussion on this heartwrenching FPP, paulsc stepped up with a unique perspective on the post and talked about what it's like to care for a family member with schizophrenia.

His comments were what I think of as the perfect Mefi comment cocktail: a vivid personal account combined with an insightful elucidation and exploration of the issue at hand -- in this case, the technicalities and economics of trying to manage a loved one's unmanageable illness. I don't know how many people are following the thread, but I highly recommend taking a look.

I don't know how to link to comments in threads directly, but you can find them through his user page. If anyone knows that little coding trick, I'd be grateful if you could link them here.

posted by foxy_hedgehog to MetaFilter-Related at 4:28 PM (29 comments total) 2 users marked this as a favorite

You can link directly to comments by clicking on the timestamp of the comment you want to link to. I've added a link directly to his first comment to your post.
posted by jessamyn (staff) at 4:30 PM on August 27, 2009

Thanks, Jessamyn!
posted by foxy_hedgehog at 4:38 PM on August 27, 2009

So, see also here on the numbers and here on why he cared for his brother.
posted by foxy_hedgehog at 5:22 PM on August 27, 2009

I agree, foxy_hedgehog. The FPP was heartwrenching. Paulsc's comments were really, really beautiful and a surprisingly uplifting counterpart to the original story.
posted by Maisie at 6:00 PM on August 27, 2009

why is that comment not sidebarred.
posted by desjardins at 7:26 PM on August 27, 2009 [1 favorite]

Yeah, those are amazing comments. Thanks for pointing these out to me, foxy_hedgehog. I avoided that post because the subject is too emotional for me, so I wouldn't have seen these otherwise. My heart goes out to paulsc.
posted by Kattullus at 8:12 PM on August 27, 2009

paulsc, you are a good person.
posted by Afroblanco at 8:14 PM on August 27, 2009 [4 favorites]

Best of the Filters, for sure. I've got two normal kids and one who is, euphemistically... difficult. More difficult than I really want to bring up here, but man -- my life is a fucking walk through the daisies compared to caring for a schizophrenic. Keep your head up, paulsc -- you're doing the Right Thing.
posted by Devils Rancher at 8:36 PM on August 27, 2009

Thanks for highlighting this comment, I wouldn't have seen it otherwise.
posted by lunasol at 8:42 PM on August 27, 2009

There is a person on the internets who to me is a stalker. He constantly writes negative things and threatening things about me and many others. His attacks are personal and not even accurate. In one of his rants he mentions his schitzophrenia. At one point he mentions having fish talk to him and his parents were manifesting themselves as people in advertisements telling him he was no good. I spent several years concerned about his possible actions should he take this fixation beyond writing and about his affect on what people thought about me.

It is after reading posts like this and comments like paulsc's that have made me a much more understanding and appreciative "target". Don't get me wrong I am still concerned and have even discussed a retraining order, but I am now much more understanding of his situation, his limitations on controlling what he does and thinks as well as the plight of his parents with whom he lives. I know they struggle with this daily and are not in good health. I also know they are overwhelmed with fear about what will happen to him after they no longer can care for him. Every "crazy lady" on the streets is someone's daughter as pointed out in one of the articles. He already has one restraining order out against him (not by me) and certainly would qualify to have others. Paulsc has quite eloquently elaborated on many of the issues facing care takers of mentally ill people. I too wish that money and effort was spent on finding a cure, but like paulsc think that in the interim, money should be spent for maintenance care.

This is not a health care issue per se. It is a discussion of community values; of what is important for the US people. WHat financial tradeoffs are we willing to make and what sort of level of "fuck off we ain't paying" is the country willing to live with.

Thank you paulsc for speaking out!!
posted by JohnnyGunn at 9:13 PM on August 27, 2009 [3 favorites]

It's thoughtful and it's quality participation. For both, I am thankful.
posted by cior at 12:17 AM on August 28, 2009

Thanks for the kind words, all.
posted by paulsc at 5:39 AM on August 28, 2009

I think it's admirable that he cares for his brother, but I'd like to point out that the story is also a cover for the "national-health-coverage-is-bad" position he advocates for here.

People that think Jani's parent's biggest problems would be fixed by a national health insurance program simply don't understand this disease, or its long term nature. The real key isn't to assume that the country can afford to care for 1% of its population on case costs that would easily be 8 figures per case, lifetime, if done professionally. The real key would be to put a lot more money, now, into basic research, to finally figure out just what the heck is gone wrong in the schizophrenic brain, and to, finally, develop not treatments, but a cure.

Community care is not the goal. Health insurance isn't the need.

I agree that we should increase funding for medical research. But I think that it's pretty hypocritical to say that everyone without insurance should just go die already while advocating for public funds to cure a disease that personally affects you.
posted by Optimus Chyme at 7:03 AM on August 28, 2009 [4 favorites]

The real key would be to put a lot more money, now, into basic research, to finally figure out just what the heck is gone wrong in the schizophrenic brain, and to, finally, develop not treatments, but a cure.

And the insurance/pharma companies are incentivized to do this how again?
posted by scrutiny at 7:05 AM on August 28, 2009

Community care is not the goal. Health insurance isn't the need.

What he says is that a cure is what's needed and that his brother and people like him are actually an edge case that makes the idea of nationalized insurance look worse to people not better. paulsc has brought up his brother plenty of times before on the site, he's not just using him to grandstand for a position.
posted by jessamyn (staff) at 7:12 AM on August 28, 2009 [2 favorites]

What he says is that a cure is what's needed and that his brother and people like him are actually an edge case that makes the idea of nationalized insurance look worse to people not better

I don't see why it's an either/or proposition.
posted by Optimus Chyme at 7:17 AM on August 28, 2009

I don't think he's saying it is.
posted by jessamyn (staff) at 7:22 AM on August 28, 2009

My impression was not that he was making a blanket case against national health care, but instead showing why, in his analysis, his brother's situation isn't necessarily a good argument for it.
posted by foxy_hedgehog at 7:25 AM on August 28, 2009

I don't think he's saying it is.

In every health care thread he has said that national healthcare is a bad thing, so I believe that you are incorrect.

Paulsc also stated that Medicare is horrible, because his parents were able to receive health care at the end of their lives. Presumably he wanted them to be able to chose a dignified death via assisted suicide: "There is a time to die. There is a way to do that, with dignity, and without tremendous medical cost, and my parent's Medicare/BCBS supplement plans insulated them from making such choices."

I agree that one should be able to choose the release of death, but not becuase you are "insulated" from that choice by Medicare.

It appears that he has seen awful things happen to his parents and his brother, and he transfers those feelings of anger and helplessness to not just insurance, but healthcare in general. Once you get past the word salad, it's clear that his solution to America's healthcare issues is "don't treat anyone, let them die." If that is incorrect, paulsc, by all means, correct me.
posted by Optimus Chyme at 7:39 AM on August 28, 2009

Optimus, I haven't followed paulsc's track record on the issues, but I don't think your characterization of his comment re: medicare is very fair.

"So long as this society does not make individual end of life choices a reasonable care alternative, for those who face the inevitable, they will get, in the best hospitals in the world, what my mother got, at an average cost of $5,100 a day: MRSA infections, pneumonia, bed sores so deep you could see the white of her pelvic bones when her dressings were changed, and maximum doses of Xanax and morphine, at the very end."

That's not a broadside against medicare, that's an argument that it should make provisions for end-of-life planning that include options other than every possible medical intervention to prolong life as long as possible.

Besides, as a passionate advocate of national health care, I'm not entirely sure how any of this pertains to his analysis in the schizophrenia thread. Are you saying his analysis of his brother's situation is flawed? If so, I'd be interested to hear your perspective.
posted by foxy_hedgehog at 7:52 AM on August 28, 2009

Besides, as a passionate advocate of national health care, I'm not entirely sure how any of this pertains to his analysis in the schizophrenia thread.

Paulsc is against national healthcare, and advocates that we instead spend that money on researching a cure for schizophrenia. I think that he believes that, because that's what he said. I don't know how else to explain this to you.

Are you saying his analysis of his brother's situation is flawed?

what
posted by Optimus Chyme at 8:18 AM on August 28, 2009

Are you saying his analysis of his brother's situation is flawed? If so, I'd be interested to hear your perspective.

That's sort of a loaded question. No one here knows paulsc's brother or what his brother is going through. It sounds tragic and horrible and I can't even begin to understand how painful the situation must be. Given that, I don't think Optimus was interpreting paulsc's analysis. Rather when Optimus said

it's pretty hypocritical to say that everyone without insurance should just go die already while advocating for public funds to cure a disease that personally affects you.

He was remarking that paulsc's comment "Community care is not the goal. Health insurance isn't the need." is true, but primarily for him, and that for many people who don't have the option of community care or health insurance, that is exactly the goal and the need. Granted, the providers may give awful and terrible treatment, like in paulsc's case, but this does not mean that we should focus on curing diseases and ignore the people who can't get their own care. To me, that just sounds irresponsible.
posted by scrutiny at 8:24 AM on August 28, 2009 [1 favorite]

A major difficulty for the mentally ill is the gap of 18 months between receiving disability benefits from Social Security (which in most cases have been earned by the individual) and eligibility for Medicare.

My son could not afford COBRA, since he no longer was employed or employable, so we helped him out with his medical bills averaging around $900 per month. That meant a second part-time job for one of us while the other was caretaking, since we were not knowledgeable enough to pay COBRA for him at the beginning of his illness. We depended heavily on family support: what would have we done without grandma keeping him company during the day while his dad and I were working, or without his sisters pitching in a lot with companionship and extra love?

We managed, and now Medicare and Medicaid help pay for his treatment during the day, giving us some peace of mind. I have become a strong supporter of universal healthcare, preferably government sponsored.
posted by francesca too at 9:55 AM on August 28, 2009 [1 favorite]

"... If that is incorrect, paulsc, by all means, correct me."
posted by Optimus Chyme at 10:39 AM on August 28

It is incorrect in that I think your reading of my comments in other national health insurance threads is overly broad, to say the least.

"... Paulsc is against national healthcare [emphasis added], and advocates that we instead spend that money on researching a cure for schizophrenia. ..."

As for national healthcare, I think it is not the same thing as national health insurance, and that it might not be a good in the U.S. for many reasons, entirely separate from those being discussed in the national health insurance debate. Or, maybe it would. I really haven't heard it, as an issue of itself, debated largely. My doc is against national healthcare vociferously, however.

In the schizophrenia thread, I never said, or implied, that we should spend money that might, in the future, be destined for national healthcare on research towards a cure for schizophrenia. I did mean to make the point that universal health insurance would not address the need for basic research into the Gordian knot of conditions like schizophrenia, and that it would cost an exorbitant amount to treat just schizophrenia sufferers under current treatment protocols, in a national health insurance scheme.

What I didn't expressly mention in that thread, was Administration and Congressional estimates that a national health insurance plan could cover all Americans for a 10 year cost of $900 billion, when one disease, by itself, could reasonably be expected to suck up most of that cost in benefits. I didn't mention it in that thread, because it would have been a pointless derail into the never-ending-all-heat, no-light-argument we seem to be having around here, on vaporware points of the national health insurance debate. I didn't think that introducing that possibly political point in that thread was a useful contribution, so I didn't.

And I also wanted to point out, subtly, because the Jani article does so at length, that consigning a person who suffers frightening, horrible hallucinations to a lifetime of partially effective "treatment," is to force him to episodically experience fear and anguish of a high order, and to spread that anguish to those who care about the schizophrenic, episodically, over decades. I wanted to make the point that systemic health insurance, doing its best to deliver "benefits" in intractable health situations, may very well, instead, deliver the result of a lifetime of inescapable anguish.

I don't think readers willing to reflect upon the Jani article and what I posted in that thread, will fail to understand the moral quagmire that supporting intractable medical conditions frequently represents. I do think that the relative stagnation of basic research in conditions like schizophrenia, is, historically, a national science initiative, but one that is so badly managed, that it is producing a near doubling of papers published each week, in every decade since the late 80s, while, paradoxically, a recent convocation of leading researchers in the field were hard pressed to find any new basic knowledge contributed in the field in recent years. We are getting a ton of publication by researchers, to get and keep grant program dollars, but we aren't getting towards a cure. It might be interesting and useful to look into that dark relationship in detail sometime, as part of some debate about national spending priorities, and perhaps even a national healtcare system, if that ever comes up, but again, I didn't think all that belonged in the Jani thread.

I think that some people in that thread were trying to drag the Jani article into the national health insurance debate, without any regard for these points, and I wanted to expand the discussion, and suggest reasonable alternative goals, like working on a cure. As a start, I'd be delighted if we could just come up with some decent animal models for the disease, in the next 5 years, to broaden the few, narrow research model attempts we currently have. Because just that meta-problem is holding back the field, at present, although I realize how hard it is to judge if you've actually given a rat, or a rabbit, or a dog, a complex mental condition like schizophrenia. But we've got to start on a cure somewhere.
posted by paulsc at 10:01 AM on August 28, 2009

And I also wanted to point out, subtly, because the Jani article does so at length, that consigning a person who suffers frightening, horrible hallucinations to a lifetime of partially effective "treatment," is to force him to episodically experience fear and anguish of a high order, and to spread that anguish to those who care about the schizophrenic, episodically, over decades. I wanted to make the point that systemic health insurance, doing its best to deliver "benefits" in intractable health situations, may very well, instead, deliver the result of a lifetime of inescapable anguish.

Given that a cure is at best decades away, what's the alternative? Euthanasia?
posted by Optimus Chyme at 11:08 AM on August 28, 2009

I think that he believes that, because that's what he said. I don't know how else to explain this to you.

Your condescending and dismissive tone really isn't necessary. Please stop treating people who don't interpret others' comments the same way you do like they are somehow uncomprehending or thickheaded. You've taken this conversation in a rather nasty and personal direction, and I regret that.
posted by foxy_hedgehog at 12:36 PM on August 28, 2009

So, not to throw, you know, science at this or anything, but there has been some pretty cool (and somewhat controversial) research being done on schizophrenia lately. I recently saw a lecture from Dan Javitt where he talked about how the general theory of schizophrenia might be largely incorrect. Many researchers feel that imbalances in the dopamine system are largely to blame for the positive symptoms of schizophrenia, and have no clear idea about where the negative symptoms come from. The alternative theory championed by Dr. Javitt is that it's actually a problem with the noradrenergic system instead. There seems to be far more data to support this conclusion. Here's an interesting interview with him if you want to read about it.
posted by scrutiny at 1:00 PM on August 28, 2009

"Given that a cure is at best decades away, what's the alternative? Euthanasia?"
posted by Optimus Chyme at 2:08 PM on August 28

I get the feeling that you're really here for the absolutist cheap shots, OC.

First of all, a cure might very well not be decades away. It might be as simple as a new combination of existing drugs, administered on a different protocol, to cause fundamental, permanent changes in brain function. Or, it might be a combination of pharmacology and CBT with modified ECT. It might even shake out to be something along the lines Dr. Javitt discusses, as mentioned in scrutiny's comment above.

Next, no one but you is suggesting euthanasia, and I get the feeling you've only tossed that out for rhetorical effect. It's possible to continue support for a course of treatment in which you personally have little philosophical investment, because you've promised people who mattered to you that you will (my situation), or because you simply haven't a better moral/ethical/medical alternative at present (Jani's parent's situation, from what I gather), against some future day when a cure will arrive. To pretend that the possibility of a cure doesn't materially alter the balance of choices that are prudent to pursue in the present, when dealing with something as complicated as schizophrenia, is to climb a whole mountain of obtuse, to unfurl your personal issue flag.

Don't do that, please.
posted by paulsc at 1:32 PM on August 28, 2009 [3 favorites]

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Why I Read Metafilter August 27, 2009 4:28 PM Subscribe

Why I Read Metafilter
August 27, 2009 4:28 PM Subscribe