Sometimes you can't make it on your own...
Twisted thoughts that spin round my head
I'm spinning, oh, I'm spinning
How quick the sun can drop away...
("Black" by Pearl Jam)
(What brought me finally to gofundme is both the realization that sometimes we can't make it on our own and the family tragedies that took away forever half my family and profoundly altered my own life, and in so doing, altered my mother's as well. But it is too long a story to tell here. As much to just "get it out of my system" as to let others newly disabled and in similar situations see that they aren't alone, I am working on a blog to go with this page. Once it is live I will post the URL.)
I recently changed my profile picture to something more appropriate, I think, since I created this page as much for my mother's sake as mine, but more so for my mother's, who at 74 years old should be enjoying those Madison-Avenue touted Golden Years. Both of my parents should be alive, taking it easy, with me worrying about THEIR health, me worrying about and taking care of THEM. I never dreamed it would be the other way around, but it is.
I grew up in a happy, healthy family. Parents who had been married 50 years and had two girls--the eldest who married her high school sweetheart and had a child, were still married 30(!) years later, and the youngest who had gone the college-then-career route. We were a typical middle-class family who loved one another, laughed with one another, spent holidays together, still took a vacation together once a year. We were happy, felt blessed.
Until four years ago, when it all went to pieces. Cancer took my father a few days after Christmas in 2008 and took my sister in the spring of 2010. And 2 months before my father died, a blood clot (four of them, to be precise) nearly took my life but instead left me suddenly and permanently disabled, fully dependent on my mother as my primary caretaker.
We don't feel quite so blessed anymore, not when 4 a.m. more often
than not finds us both still wide awake, grief and despair, the gravity of our
situation, making sleep elusive. We are
hanging on by our proverbial fingertips, and the nails are breaking one by one.
What savings my parents had was eaten up by my father's cancer and treatment.
My father lasted 8 months from diagnosis to death. You wouldn't think the
medical bills could grow so impossibly large in such a relatively short time, but
we all know that they absolutely can, usually do.
My sweet sister lost her 10-year battle with cancer 2 years ago, a
year-and-a-half after my father died, at age 51. Two weeks before my niece
graduated from high school. (And oh how I wanted to scream to the heavens,
"No fair!" even though I know life is rarely fair. Death crooks a bony finger at each of us eventually. We
can drive ourselves crazy looking for answers to the unanswerable, keep
ourselves constantly distracted so that we don't dwell too often on that bony
finger that will eventually point at us, or we can brace ourselves against
life's headwinds and try to keep moving forward, live while we're still alive,
as hard as that sometimes is.)
They don't know what they don't see
behind closed doors
Is it real or just something we have
ignored
When little wings have been clipped and
bound
And tied to this cold, cold, cold, cold
ground...
("Cold Ground" by Rusty Truck)
My mother spent her first day of retirement in a hospital waiting
room, anxiously awaiting the outcome of my sister's first (of many to come)
cancer surgery. She became a caretaker that day and never really stopped. First
helping my sister while she recuperated and then underwent her first round of chemotherapy,
and then again a few years later after yet another surgery and more
chemotherapy (and my own hospitalizations and recuperations for Crohn's disease);
then taking care of my father single-handedly when he went on home hospice in
2008. And then attending to me when I had to move back home--2 weeks before my
father died--since I faced a long recuperative period, could never again live alone, independent. For
about 3 brutal weeks after I was discharged from the hospital, my mother was
single-handedly the primary caretaker for her entire family. Then an angel, two of them, stepped in to give my
mother the help she desperately needed, right as she was finally reaching her breaking point. My aunt"”my mother's favorite sister"”moved in with us for about
a month and her daughter, a nurse, came every evening after work even though
she herself was worn out from working 60-hour weeks. They were there for us when we
most needed them and when my father finally passed (and later, taking in my
sister on home hospice), and I am eternally grateful to them both. But that my
mother didn't go down, stay down, is a testament to how strong she is. Was, as
all of it has finally taken its toll, physically, emotionally, and now,
financially.
What money my mother had left after paying off my father's bills
was eaten up almost entirely by her own and my bills for 2 long years, until I
became Medicare-eligible. Thankfully, I was able to pay back all the bills
she had paid on my behalf during my 8-week hospitalization and during that 2-year
waiting period (not to mention that first year, when PTSD rendered me practically catatonic). It was a long 2 years. But unfortunately, my monthly disability
check does not cover all my medical co-pays and co-insurances, or the medical
supplies and prescriptions Medicare does not cover at all. My (10) prescription
co-pays and supplemental insurance premiums for 2011 alone totaled almost
$11,000. More than three-fourths of
the total disability I receive in a YEAR.
Ironically, because I earned a good living most of my life, I receive a few hundred more in disability every month than the national average, or so
I've been told. Of course, that is the gross, not the net, not the amount I
actually have to live on. So I am
in a different sort of "donut hole." I get about $300 too much in disability
to qualify for any state or federal assistance yet run anywhere from $50 to $100 short every
month because my ongoing medical expenses are astronomical. The punishment, you
could say, for surviving a catastrophic medical crisis that apparently people don't
survive. And, of course, my mother gets nothing for caretaking (though, absurdly,
she would if she took in a non-family member and provided the exact same
caretaking.
Falling slowly, eyes that know me
And I can't go back
Moods that take me and erase me
And I'm painted black...
("Falling Slowly" by Glen
Hansard)
My surgical team calls me their "miracle patient"; I
often consider my surviving a curse, the monkey on my mother's back. My medical
team originally gave me a year, so at the time money was the last thing on our
minds. But as I slowly started improving, they revised that, gave me possibly 3
years. It will be 4 years October 2012. And now money, or the dwindling supply
of it, is foremost in our minds. I know I should see each day as the gift that
it is, but it is difficult to see it that way when instead I see the increasing
financial toll it is taking on my mother, on me, but on my mother especially.
It is a hell of a thing"”as thousands of Americans know"”to start and end each
day dreading the arrival of the mail (because that means more bills), wondering what day will be the day your bank balance finally falls below
$50. It is an awful, helpless feeling. I feel like it
is all my fault, which I know is ridiculous, but I feel that way all the same. Were
it not for me, my mother's thoughts wouldn't constantly revolve around how this
or that bill is going to get paid, worrying what we'll do when the upstairs
plumbing finally rusts all the way through or the furnace"”on its last legs"”finally
just stops working. When the carpet is finally so worn out that you start seeing the floor underneath. When you buy less and less groceries trying to save a few more dollars here and there.
My mother's small pension and Social Security check combined is
barely equal to my disability check. Yet she is having to pay $25 here, $50
there, whenever my medical expenses run higher than usual and there's nothing left over from my disability check. Even my 401K is
gone, used to pay off medical and other bills. I sold a 5-year-old car in great
condition, not even 25,000 miles on it simply because it was out of warranty
and I knew we didn't have the money if something went wrong with the car, and
because I knew I could still get a good trade-in value. So I bought a new used (2011)
car with my trade-in, and now other than oil changes, etc., the car is under
full warranty for 6 years. Six years of peace of mind, at least about the car. And my car payments and
insurance are now lower. I have saved us an extra $150/year in car payments and
an extra $85 in insurance premiums. That extra $235 savings a year will pay for
about 6 oil changes. That is how we think these days, every thought or move a
strategic one about how to eke out a few more savings.
I called our cable company and cut our service way back, saving an
extra $35/month, or $420/year. And that is HUGE. My mother can use it to go to
the dentist again (she hasn't been able to go in 2 years), buy meat
occasionally (which, because of the cost, she has mostly stopped eating), buy a
pair or two of slacks that actually fit (she was a size 6-8 before everything
happened; now she's a heartbreaking size 2), put any money left of it toward
replacing the furnace or plumbing, whichever gives out first.
I've been waiting for the spark myself
I been scrambling in the dark for health:
("Dead American Writers" by
Tired Pony)
I have at least four cavities that need filling, or, worse, have the
teeth pulled (there is definitely no money for a root canal), but I try to
pretend the cavities aren't there. Since I don't eat food (when you lose ALL your
intestines to a blood clot, food becomes something you simply yearn for,
constantly), I don't have to worry about toothaches when I chew. Or not much.
The "food" that keeps me alive comes by way of what looks like a big,
3,000-mL bag of milk, given intravenously every night over 12 hours. The bag is
connected to a pump whose tubing is connected to a (Hickman) catheter in my
chest. The tube in my stomach (a never-ending source of pain bad enough I am on
two different strong opioids round-the-clock), which is actually a feeding
tube, works as a sort of Frankenstein-style GI tract in me. I can eat some
foodstuffs"”pudding, pancakes, soup, cake, cornbread, plain biscuits"”as they are
"soft" foods and less likely to clog my tube more frequently than it
already clogs. But I have to take small bites, chew until what I have eaten is
basically paste, then swallow huge amounts of fluid to ensure the tube doesn't
clog. All of it drains into my "J tube," which in turn drains into
what is really a urinary drainage system (long tubing connected at one end to
my J tube and at the other end to a drainage bag that I empty several times a
day).
As I said"”Frankenstein. Which is what I feel like most days. But
that's what happens when you lose your small and large intestines to a blood
clot (when my body inexplicably sparked 4 blood clots one lovely October evening in
2008 and smashed what was once a "˜normal' life all to hell) and you have a
creative surgical team. The average adult has about 28 feet total intestine; I
have 4 INCHES of jejunum, the topmost part of your small intestine that the
stomach empties food/liquids into. That's it. Those 4 inches are the only
reason I am still living. I don't say "alive" because
"alive" implies more than just breathing, just existing. But for the
most part, that became my life nearly 4 years ago: existing. Spending 5-6 hours
every day attending to my body's various medical demands--for IV and heparin
flushes, flushing clogged tubes, cleaning and changing the dressing around my J
tube, keeping my catheter site as sterile as possible to ward off deadly blood
infections, hooking up to TPN (IV feeding) 12 hours every night, the 10 medications I take daily, the 6 monthly doctor appointments, the weekly home
nurse visits to clean the area around the catheter in my chest and ensure the
IV lines are still patent (i.e., usable), the biweekly or monthly anticoagulation
clinic appointments to make sure my blood isn't too thin or too thick,
replacing the J-tube itself, in the hospital under anesthesia, every 4-5 months.
Sponge-bathing as I can no longer take showers or sit in the bath tub or get in
water of any kind (because my IV site has to remain as dry, as sterile as possible),
washing my hair in the sink.
When all are one and one is all
To be a rock and not to roll...
("Stairway To Heaven" by Led
Zeppelin)
Not only does my mother have to help me with much of the above,
she also has to (try to) maintain a house that is some 30 years old and showing
its age. Because I cannot do it, can do so little actually, SHE is the one
mowing the lawn in 90-degree weather, shoveling 8 inches of snow and/or scraping
it off the car when it's 30 degrees out. Replacing the pole in the closet
holding all the coats at 3 in the morning because the one that has been there for
30 years suddenly breaks, dumping coats and jackets everywhere. At 74 years of
age. It makes me so angry. So helpless to do anything.
It is exhausting. A daily struggle that so often just wipes me
out, the enormity of what has happened to my family, to my mother, to me. And
how outrageously expensive it is to keep me alive, even with Medicare. Modern medicine
is really both cure and curse. Doctors routinely perform procedures that even
decades ago were considered miracles, but miracles don't come free. And therein
lies the curse, because the price you pay for that medical miracle too often
traps you forever under the grinding foot of poverty. And though I cannot permanently lift that
'foot' off my mother's neck, maybe I can somehow lift it enough so that she can
breathe more easily, so we can both breathe more easily.
And so I find myself "in the role of Blanche," hoping to
rely on the kindness of strangers. Because I have come to realize that when
your head sinks below the surface for what you think is the last time, suddenly
a hand is there for you to grab onto, keep you from drowning. And I also know
that an old proverb is true, one I see repeated here in heartbreaking story after story and in those who offer that hand to grab onto, that there, but for the Grace of God, go any one
of us.