I’m still dealing with the ongoing drama of coordinating my dad’s medical care – he just got a feeding tube put in, as he stopped eating and drinking as a result of recent oral cancer surgery (and as a result of the delirium, post-surgery, that’s been going on for a good month+ now, and that no doctor bothered running tests until we demanded it yesterday) – and the absurdity of the fact that it doesn’t entirely seem clear if any of his doctors is actually in charge. So, my posting is going to be a bit off this week, and already has been. Sorry in advance (and after the fact).
At some point, I will do some longer posts about all of this, as I find it fascinating – and horrifying – that my dad has some of the best health insurance in America, as a former corporate executive back in the days when health insurance was really good, yet, the roadblocks to care that we’re finding, you’d think he was the first elderly man in existence to have a medical condition.
Trying to figure out which doctor is in charge at every step of the way (and it’s not that they’re all in charge, it’s that none of them are).
Trying to determine who should have done the tests about the sudden onset of delirium that dad had right in the middle of chemo, and which still hasn’t gone away a month later (not only didn’t they do any tests post- onset of delirium, but the doctor didn’t even bother showing up when my dad suddenly went nuts in the middle of the chemo, even though mom asked for the doctor, and another patient witnessing what happened was so disturbed that my dad went from sane-to-nuts on a dime that she gave my mom her name in case we wanted to sue).
Another question that’s been hell getting answered is what kind of home health care might his insurance cover (god forbid anyone give us an answer on THAT one, lest we actually use it – Aetna Medicare Advantage, j’accuse, but I’m sure they’re all just as bad). We’re only starting to get to the bottom of that one, and I’ve been inquiring for weeks.
For the “best health care in the world,” in the “best country in the world,” I feel like I live in a developing country. No one will tell us what you’re supposed to do when things like this happen – even when you have what is supposedly “great” insurance. Imagine what the care the other guy gets.
Hell, the hospital even ran out of blankets last night, so dad was shivering in bed, with my brother trying to scrounge up extra sheets in case that might help. Seriously, ran out of blankets? Do we get a discount for a room without blankets?
Or another example, my mom is the one who was supposed to tell the doctor that a man who hasn’t eaten in ten days should perhaps be getting more than just water through an IV drip. My mom was the one who finally had to step in and say, hmm, if he hasn’t eaten in ten days, maybe we really need to get a feeding tube in. And a nurse visiting our home to check his vitals, and teach mom how to do the IV, was the one who just happened to ask why dad wasn’t even getting glucose via the IV drip, let alone nutrients or electrolytes, when he hadn’t eaten in days? Good question.
And now we’re dealing with the drama of trying to find a skilled care facility to hopefully help dad recover over the next few weeks without literally dragging mom, his primary caregiver, to the ground with him when he incessantly tries to walk around the house at all hours with his apparently-chemo-related delirium, and wobbliness brought out by the surgery, not eating, and having lost around 40 pounds.
Oh, and to add to the fun, mom fell in the hospital today – something I warned the hospital social worker about yesterday, that 83 y.o. mom is hardly the person who should be propping my dad up as he wanders around the house aimlessly, and that at some point they’re going to fall together.
Fortunately, after a visit to the emergency room, mom appears to be okay and back in charge (though we’re all in charge at the moment, with mom, obviously). Of course, mom’s visit to the emergency room didn’t stop the hospital from calling my sister – since mom was apparently waylaid – and attempt to discharge dad anyway. Where were they going to discharge the sometimes-delirious newly-installed feeding tube man to? Who knows. Fortunately I got a hold of mom, who was ticked, and who put the cabosh on that one. And we just found out that the feeding tube isn’t even feeding him any food yet – apparently there are some issues – and they were going to discharge him to my sister today? Seriously?
I wish I knew all of this – just what a mess it is dealing with a sick loved one in our health care system even when you have excellent insurance – a few years ago when were going through health care reform (not that it would have addressed this). But it’s a crime how insurance companies (and doctors, apparently) have no system in place for you to actually get the coverage you paid for, let alone find out what kind of benefits you just might be eligible for.
We’re training an 83 year old woman, with a failing memory and other problems, how to administer an IV and work a feeding tube, in addition to how to deal with a man with hopefully-temporary delirium, because his insurance doesn’t really cover any of this – or maybe it does (and there’s no apparent easy way to find out).
The irony is that I always thought the old joke about how America has the best health care in the world – “if you can get it” – meant “if you can afford it.” Apparently, money isn’t the only obstacle. And even planning ahead and having good insurance isn’t the only obstacle. There’s also the bureaucratic obstacle to getting health care – from your doctor(s) and from the insurance company - even if you can afford it.
Welcome to the best health care in the best country in the world. It’s to die for.