Tuesday, September 25, 2012

Thoughts On Life, Death, and the Closing Gap Between Them


Lest there be any confusion from the title of today’s post, or anyone feel ultimately let down, let me say right up front that I don’t have profound thoughts on the subject at hand, and absolutely no answers.  Really, I’m not sure I have too many coherent thoughts, even; mostly what I have is just a bunch of confusion and frustration.  I just wanted to be sure the record was clear from the beginning.

IV in hand 9-24-12

As I mentioned yesterday, my grandmother (we call her Granny) had to make a trip to the ER.  Bottomed out blood sugar levels yesterday afternoon, and she was essentially unconscious by the time we knew there was a problem.  Thank goodness my uncle came by when he did.  So, the ER did their job—got her stabilized and sent her home.  Per their orders, we adjusted her medication a bit, stocked up on some slightly higher sugar foods than normal and thought she was good to go.  Her home nurse agreed after last night’s visit.

                                                                                                   Image courtesy:  olovedog / FreeDigitalPhotos.net  

Approximately twelve hours later, her blood sugar was again dangerously low, and I spent a frantic couple of hours trying to get enough sustenance into her to bring it back up, then the rest of the day trying to stabilize it through diet.  That was in between trying to get her to the bathroom when she needed to go, and then cleaning up afterward because we never quite got there in time.  My husband says, “I don’t know how you do it”, but I’m quite certain she wiped my butt a time or two in years past, so that’s okay.

What’s not okay, though, is the lack of options we have to do anything else.  And, like most people without options, it’s because we don’t have enough money to make those options available.  Today (and last night, really), Granny probably needed to be in a hospital.  In the long-term, she either needs to be in a nursing home or have a live-in caretaker.  But do you know how much that stuff costs?  She’s currently receiving hospice services, not for a “typical” life-ending disease, but for a diagnosis of “failure to thrive”.  I’d never even heard of such a thing, except in the context of babies, but apparently it can happen to adults, too, especially when they get older.  Granny’s 92, so she definitely falls into the “older” category.

Anyway, this care is paid for by her Medicare and supplemental insurance, which is great.  What isn’t so great is that she can’t go into the hospital for circumstances directly related to her hospice diagnosis unless she wants to A) discontinue the hospice service, or, B) pay for the hospitalization herself.  Neither of those are great options.

As for a nursing home, neither she nor I (nor the combination of the two) have an additional $3500 per month (minimum) to get her into a decent facility.  Her hospice people believe she would now qualify for Medicaid, which does have a nursing home option, but the approved facilities around here are not places I want my Granny to spend her final days, however many she may have left. 

And, like many families, bringing her into any of our homes has challenges we are not equipped to overcome, and would not solve the underlying problem, anyway, as none of us are at home 24/7 to care for her. 

The confusion for me comes first from the rather inexplicable physical symptoms Granny’s been having.  Given that we typically have to medicate her to keep her blood sugar low enough to be healthy, I have no clue why all of a sudden we can’t keep it high enough to keep her from slipping into a coma.  And, I’m pretty sure that’s not an answer I’m ever going to get, which is where the frustration begins.

You see, I’m pretty sure that I won’t get an answer because the one thing I’ve learned as Granny’s health has begun to decline in the past few years, is that the medical profession pretty much writes you off once you’re old.  Everything that goes wrong is simply attributed to age or “part of the disease process”.  And to a certain extent, I get that.  I mean, I understand that our bodies slow down as we get older; things wear out, and we simply don’t function as well as we did in our younger days.  But if there’s a body part breaking down and causing a symptom to present, someone ought to be able to explain which body part is failing, why we’re seeing what we’re seeing, and what we might expect next.  But I so rarely get any of that information.  If she were even 20 years younger, I bet they’d be running tests like crazy to figure out what was going on.  And if she were 50 years younger?  Her caregivers would be falling over themselves to find a reason—and then a treatment—for her symptoms. 

So, yeah, it’s frustrating to me that the medical profession has made the decision that my Granny isn’t really worth fighting for, simply because of her age.  I don’t like the idea that they get to decide that she’s lived long enough, and her best days are behind her anyway.  And I certainly don’t like the reality that if we had tons of money to spare, that decision could be made as it should be made: by Granny and our family. 

It’s true; she has had a long life, and though in many ways it’s been a hard life, it’s been a good one.  And you know what?  Maybe her best days are behind her.  But I feel like the system we’re working within is set up to guarantee the truth of that statement, to create circumstances where it simply isn’t possible to give her more good days.  It just doesn’t seem fair that life boils down to this.