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.
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