..Where as Jon Bon Jovi played Central Park, just out the window; "its my life...now or never..." wafting through the hot apartment here, the hard work of life and death was being folded over and decided upon like a napkin tossed to the side in any sidewalk cafe up here on the new gold coast. Not so many days...oh maybe a week or 3 ago, wasn't I planning my little silly trip to Austin and the Netroots Nation? Us girls going to blog in our little world of the in-crowd of our own device? Our beautiful writerly posse looking at the entourages float by with a new sort of pop star leading the way, and us just looking; trying not to laugh.... But then, it seems like each step of this thing has played out at its own speed. I am not the boss here. I follow the powers of a secret medical schedule, ancient yet somehow strong internal organs, dramas unfolding as equipment and supplies slowly come and go with the tides, and the very delicate nature of the line between life and death controls the days and nights in these halls and rooms full of my childhood. I can vaguely hear in the background the leaping and chirping of those who want to say "Me too! My life too! 70 years of it!" like a buzzing fly from a long time ago, sitting in court eating apricots...but no, this is my story and these are my ideas of how a family, much less a society, should run. So, I will hear no more of all that...no more...

No sooner had I touched down at the Rooster Ranch, Wednesday before last, or before that as days blend into weeks, having left laundry and all that silly straightening up nonsense for my glorious days sans kids to get all that stuff done, when I got a call from my grandpa's doorman that he had fallen in his kitchen and was being taken to the hospital. I guess I was bringing Ben to an appointment when the call came in, so I talked to the ambulance driver, my grandpa who was being wheeled past apparently, and figured out where he was going and dumped Ben off, called Mom to pick him up, and jumped on the highway to the city.... the rest is part of the ongoing story that this time unfolded from St Luke's, the very nice cardiac wing part of the scary horrible downtown Roosevelt emergency room, where we spent quite a few hours deep into the night that first night....

This is just part of life when you're 98, and the details don't really make much of a difference except that it gets a little more real and alarming every time we find ourselves crammed into a spoke in another triage-in-the-round, with too many beds on wheels close together and lots of doctors discussing quietly in the middle of the wheel what the disposition of each spoke will be....I could almost grab and hug those scruffy guys from the relief; on duty too long and digesting alot of information very quickly, they take the time, explain whats happening, and then disappear around the wheel again.

So with him finally ensconced in an elite specific department, 70 or so blocks north, I had been able to actually sit for moments at a time and try to get through the pieces of the NY Times that I'd been carrying around and get some of this down.... To that end, I'd been hauling my laptop envisioning throwing up a post or two on the go. All I ended up with was bits and pieces and some long parts that I am still trying to beat into shape somehow. Honestly, Ive spent more time staring at people magazine and on the phone than being productive at all.

That's always hard for me, because there is just-so-much-to-do, between 2 households, family drama and whats going on with the man... and if I'm not jumping up every few minutes, I'm trying to sort the receipts so as to account for one place or another and to keep up with my bank, and also, as always when I interact so much with the system, the real lives being lived by the people who care for the sick and elderly in this country take me over. This guy, my granddad, is not so much sick as he is old, and as much as we overlook this population, they are us; not the Christian charity of the beggar in the street us, but the flesh and blood of where we will definitely be one day whether we turn away from it now or not, us. Never have I seen this with as much clarity as I do now.

This fall, a day on the floor with the I've-fallen-and-cant-get-up button left on the bedside table, heart attack, pneumonia, whatever, has been a serious occurrence in our lives that has incapacitated not only the faller, but the one-who-brings-the-groceries, (and other stuff as necessary.) I see alot of denial around me about the reality of this thing and what it could have been, almost was, and is. But grandpa and I keep looking at each other and exclaiming about how bad this is, because we've been through this together a few times already and we have what to compare it to. The confusion that the hospital causes in the elderly, not to mention the young at this point, is really hard to handle, and my aunt, accidentally in town this time, took the opportunity to manipulate words and take seriously what he thought he was saying to me...lets just say it was a battle that I didn't deserve after all of these years. Not that it wasn't expected.

For the first week I kept thinking that at least this happened before Netroots Nation in Austin, because if I could possibly get everyone situated, I may have been able to actually go forth without that familiar nagging lil' what-would-I-do-IF, scenario playing out. I love the thought of Grandpa having a couple of nurses trading shifts and keeping him company, such as that is. It's really, really hard to be this old and to remain so sharp and aware. Its really hard to be someone who was always so independent and to have the decline play out in slo-mo to a clear head....and its very hard for me to witness up close the very physicality and resultant disappointment of it all.

But, we are finite, and there is a reality to all of this that is inescapable. This lump of flesh and all that we hold on to is the same natural matter that the woods envelope and suck down each time a tree falls or an animal dies... in my woods where somehow the questions of heaven and hell don't matter much because nature just makes sense on a very basic level.

I suppose that the real deal of the experience of who you have been, how you have made amends for your trespasses, and how you have contributed to this rotting culture, may be all that matters ultimately. What becomes of the complaints and broken hearts of this world? What about wrongs and crimes committed by masters of war? Their names are uttered throughout our brief history to be forgotten except by a few historians, whatever that will look like, in some future world with a different history that matters, or maybe it'll all be just spun into the sun when this place is done.

But here and now, for whatever its worth, what of the fringe of society next to us in the rolling bed, waiting for a pain shot for his sickle cell, all defiant and crude?... or the other side crying after some altercation, with the cops leading her around? Tattoos and flabby stomach, her tired puffy face having seen better days. My Mom would have listened and figured out everyone's story there, but I was weary and lonely under the huge responsibility and the task ahead. I could hardly look at what had become of grandpa, tiny there in that bed after a day on the kitchen floor.

I just kept thinking "Isn't our strength as a society measured by how these exact people are treated? How can we even know who they might have been when they have already been treated so badly that all that's left is their anger, and then the returned anger from the nurses and doctors who have heard this story over and over and are tired as shit, but somehow have to maintain professionalism? How can you love and serve that? The same old guy that is my grandfather there is also looked at as a 98 year old with no mind, to be handled as such...and even in good shape sometimes confused.

The burn speed of any of us seems to be directly attributable to how much real change we can effect in people's lives and how much support we get from those around us; even a boss, family member, co-worker, or our government caring rather than putting up roadblocks.

Tied hands in the face of swarms of the needy, in a corporate America with a bottom line to meet, brings to light the reality that treating the masses and preventative care costs too much if not subsidized somehow more than is currently acceptable in this society. At the same time an uninsured population can cause corporate failure, so in order to stay in business, if that's what medicine is to be reduced to, a certain clientele must be attracted; one with certain profitable diseases and good insurance. ...well, not even that happens in a bubble and it takes some very special people with a keen interest in bodily fluids and all that entails, to wake each day ready to go out there and help people; all people, regardless of their ability to pay. Though upstairs somewhere, the calculators in the corporate office cant help but drive the agenda and push back just a little at the practitioners, making it just a little harder to get a test or a service...just a little more paperwork and time...just a few more hoops to jump through.



The only good part about this thing has been that I have met some pretty fabulous and dedicated people who are changing lives every day in profound ways. These are people who should be leading our medical establishment rather than struggling to make ends meet and hoping that their own health insurance isn't changed again so that they can't see even their own doctors.

Here we are in the supposed richest country in the world, in the most fantastic city ever, surrounded by tourists, and families documenting every step and breath of the memories that they create on vacations, in weddings and anniversaries...because that kind of white-wedding-American-happiness leading to the big forever-maybe is what we are all entitled to in this greatest country in the universe and beyond! Whoever said that it was going to be rose gardens and a yearly trip to Disney? I know that story. I've seen American Beauty just like the next Sam Mendes fan, and I never aspired to anything close to Disney or even an outside cabin on the cruise. The thing is that maybe if we can't get the house, we can make it to Disney or NYC to create those American memories. But does that make up for the loss of lifetime security that the crumbling American dream has left us with? I suppose that we can look to our photo albums and videos in our old age, but where will we be when we're clutching those few relics left over from a life of trying to make it OK by continuing the pattern without having the foundation from which to support it all? This is what I call the "shiny, shiny!" distraction method, where the fireworks go off at the magic Kingdom at the stroke of it's-too-f'ing-late-to-secure-your-retirement time. In other words, all the big vacations and weddings in the world amount to nothing when you're old in a state run home.



I guess that I've found that ultimately the things that matter the most are the little day to day experiences that make up our lives rather than the grand experiences that we've been told are necessary to make us whole. I wasn't raised to want that wedding or much of anything actually, and yes, my happiness tends to spark around funny little chickens running across the lawn after a moth or a wiggly pup. And whats wrong with that? A rumbling subway or a train groaning through Glenbrook when Ive been at the bird store....I couldn't want a diamond that would give me more than that. But then there is love, of course.

Yes, and Will and Ben; will we ever look back and say "remember the year that everything went to shit?" or will it just fall into line with so many other shit years? They seem to line up these past 8 or so years (yes, I am trying to blame this on Bush!)...or maybe I just don't know how to be happy (turn off the news, maybe? I hear it works...) Who knows? I am acutely aware that things could still go further down before it drags slowly back uphill. But something that I've grasped hold of pretty hard lately...well, for a while...is to try very hard to do everything that I do for a really pure and real purpose. Not to go into anything expecting something back or feeling like there is some other purpose other than just the quality and feeling of the task at hand...does that make any sense?

I am very good at it some of the time, and mainly because I find that these days I don't really want alot as far as the material things go. The things I want are more in the way of a feeling of order to the world again, that might indicate that the American culture wasn't really falling to shit and that Americans weren't becoming selfish pigs worse than they had been. I want some sort of feeling of being less alone, and that has nothing to do with lying to myself about forever companions or love, but just the community that seems to wax and wane around me as life gives or takes our time...I sometimes wonder if I will have anyone like me in my life when I am as old and infirm as grandpa, and more, if I could even stand it if I did.

They say that time goes by so fast, and even knowing that and trying to hold on to the important moments with pictures and movies, or consciously basking in the experience (my little trick that doesn't work too well in the long, long run,) inevitably you wake up one day and you can't remember how you even made it through one year or another, while you marvel at how all the children you know are now towering over you.... In wonder at how time passes so quickly, and scared at the prospect of time speeding by faster and faster till you are the one in the triage bed, old and scared, with hopefully a semi-sane family member nearby.

So, amidst that accidental aunt (accidentally was in town for the big fall down/heart attack) acting horribly towards me, and the most incredible array of scary rotten home health aides and a few sterling examples of what our health care system should reward, came the most fantastic and incredible Visiting Doctor of the Visiting Doctors of Mt Sinai Hospital. This is a program that I had found over 2 years ago after Hi had ended up in the emergency room at NYU medical center and had gotten such horrid treatment, and such neglectful aftercare from his longtime physician, that it became clear that he needed a geriatric specialist. There was another practice on the east side, but this was one was close by and ended up amongst the printouts I sent him, even though I still had doubts about Mt Sinai as a whole. He got on the waiting list like everyone else, and began to have home visits from an array of doctors and specialists from this practice that does most of their work in the home.

I had never personally met the doctor that grandpa ended up with after the one that I did know left to have a baby , and then the next one moved on. Because they spend their time in the field seeing patients, you've got to be around when they come or you end up on the phone with them. And I've got to say that in a world of worry and getting the old guy home and not knowing how I was going to manage this thing between the visiting nurse late on a Saturday, no supplies, and a wonderful aide who probably saved my life that weekend, (while my aunt decided to frantically "clean" and throw away all of grandpa's things that seemed dirty to her,)...no sleep for days and then, like a super hero, this young Dr, infamous to me already for how much Ive heard his words of advice and instructions, strode into the hall with a student in tow, tall with long hair, and maybe all of 30-something, and proceeded to not only take control of the situation there and get my grandfather in a good frame of mind, but then continued to call and check in and come back on his own time, actually spending a few hours here with IVs hanging from a nail in the wall at one point, and checking everything. This is the kind of treatment that we don't get in America anymore, and I'm sure, that it saved his life. I've heard the same sorts of stories of other practitioners from this service, and its incredible to find such a simple idea being put to such great use in helping so many people.

This doctor put himself through medical school and works 3 jobs to pay back his loans. A brilliant young practitioner who goes into the homes of his geriatric patients all the time should be spending any extra time he has doing studies and writing papers about this population. He has insight and access to research that can't be done any other way. But, instead he chips away at a mountain of debt in a country where money piles up every day in the coffers of the rich, and too many of the elderly are hitting the insane donut hole in their prescription insurance, which means that they will have to somehow come up with 2 and a half grand out of the air to pay for the rest of their prescriptions until they reach a catastrophic level and qualify again for coverage. If by then their nutrition and bill situation hasn't hit catastrophic.... then maybe they can make it through another year. Well, yeah, my grandpa was one particular person who was only on one pill and an eye drop, but that's unusual...and what can any of us do in the face of government plans that seemingly come straight out of Soylent Green?...It reminds me of that Morning Sedition bit where the Bush Administration unveiled their new Social Security plan by burning old folks on a pyre.

I've again also come up against the disparity in pay between the health aides and the CEOs...not only at Mt. Sinai, which I wrote about last year, but at Visiting Nurse Service, which has managed to screw up quite a bit of this case. That there are people being paid $7-$9 per hour to totally physically care for the elderly and infirm in this country is a shame. The quality of caregivers varies and the the best and brightest will often move on to other areas of care giving or only work 3 shifts per week in order to get their health insurance and do private work the rest of the time. The helpless are often not in a position to refuse a bad caregiver; even my grandfather, if left alone here with an aide, would not have been able to use the phone and would have had a very rough time telling anyone with him what he needed or if anything was wrong.

The healthcare workers union has made a bad deal with no varying levels of experience within the Aide job description, and no merit pay. So a 20 year veteran at this makes maybe a dollar and a half more per hour than a newly starting aide and the people who book the cases don't know one aide from another and don't even get much feedback on them, unless its negative. Not only that, there are always some people out there with attitude problems and quite a problem with English skills.

I have had a parade of some of the best and worst through here, and because my grandfather has been instrumental in building a VNS hospice as part of what he does philanthropically, he should have been treated as some level of a VIP. Not that we demand that, but there is a huge disconnect in that not one of us "clients" can call the person handling our case and find out who the person is thats coming to our house for the next shift. No one in the very busy office has worked with this person? No one knows if they speak English?
Some of the aides that arrived here were unclean and smelled so bad that I couldnt have stayed in the apartment with them for a day. A man who supposedly spoke English and Russian was actually Chinese and deaf. He sat and did Soduku for 12 hours and couldn't hear either of us calling him, nor did he look up regularly. By the time I had walked up to him and waved in his face I might as well have moved grandpa myself!

I cant blame the aides, though some aides blame others for not taking enrichment courses or taking advantage of whats available out there. I guess that 12 hour shifts of dealing with differing levels of sickness and trying to go to school and have a home might be too much...who knows? I just would like to know, as I get older myself in an uncertain world, that the very corporate healthcare system will take the time to know who they are sending out to bathe and dress their patients. Many of the aides cant even speak English well enough to call 911. And someone's brilliant idea of an automated check-in and out system for the workers ensures not only that they are further removed from the case managers but also that there are snafus within the system that maddeningly screws up the paychecks. The aides are faced with a menu of what services they performed within their 12 hour shift, which they must enter numerically on the touchpad...and often they are on a cell phone or an old phone or in a hospital room....This is drive-through healthcare but, someone, somewhere down the line from the efficiency experts, is the person who actually touches the patients, and if that patient is your family member you might want to have some idea of what goes into finding the perfect caretaker, if you can even afford one past the 21 hours per week that Medicare allows.

Through all of this grandpa has been railing at how its gone and how difficult its been. I know that the lack of continuity in aides and the slowness of organizing the equipment delivery hurt his recovery greatly, probably costing more in the long run, (if one were counting dollars and cents.) Its also allowed us to find some wonderful people and strengthen ties with the few wonderful people that we had found before. I just know that it doesn't have to be this way, and I wonder how the upper management, who are no doubt trying to make ends meet on their own level of existence in this most expensive city, throw up their hands at what is not working as if they are looking at a political election and saying that one vote cant possibly count (see Bush v. Gore, 2000.)

My point is that there are no more Norma Raes or Ceasar Chavez' out there who are gonna try to make it better. Everyone is just so under it that there seems to be no way out. The long term plan of the neo-conservativism begun surely before Reagan, and back to Nixonian plans for a higher order in the executive branch, has worked and is working in that no job is safe, workers are disposable, and if it can be outsourced you'd better believe that it will be. Thats your taxes, your medical records, your credit cards...and there are no good secure jobs for the middle class. What do you get for struggling to become a doctor? mountains of debt and multiple jobs to pay it off....that is unless you're from a rich family or you jump to a specialty that will enable some profit in the future.

Brilliant at Breakfast is going to be fed directly to the Air America front page this week, and somehow I thought it best to publish what is probably a too long and too personal post on the day before. But really, healthcare and the disposition of the poor and middle class in their later years is a serious political issue that we cant overlook in the face of our stimulus checks from uncle Bush and just running fast enough to keep afloat. Make no mistake about it, there are elements out there who are trying to destroy the middle class and who hold the poor in such disdain that they actually don't care if they all die...if we all die...and, by we, I mean the middle class, if I even qualify, considering that Ive been lucky enough to come from a family that could help me with an array of things like medical and school expenses.

So, anyway, he lived to fight another day. He was clearly not ready to go, much to the surprise of those who stood around saying that he would never get up from that bed. If its for 2 months or 2 years, or even 2 days, hes walking a little, getting around, and watching TV happily...Obama has been on today and is looking mighty presidential.

Reasons to be cheerful!




c/p RIPCoco

Labels: insurance industry, medical malpractice