That was the original name of Headed Into Overtime. I called it that because, well, we’d been initially “rejected” for hospice services.
Jamey simply wasn’t dying well enough.
Mind you, he’d received a referral from his oncologist stating that she’d found him “hospice appropriate”(for a detailed look at what is necessary to be accepted into hospice, check out: National Hospice and Palliative Care Organization)
But when it came to actually being accepted into the program to which he was referred, we faced a hurdle: that agency’s own doctor had to also deem him eligible.
And he didn’t.
So we were placed on a “not-quite-dying yet but maybe probably sort of close so we’ll bench you until the time comes when you’re closer to potentially dying within 6 months” list( for those of you who didn’t click the above link, “6 months ” is the arbitrary expiration date hospice uses as a benchmark for eligibility).
In our case(ok, more aptly put–in my case, since at this point, Jamey either literally couldn’t or chose not to accept the severity of his health condition), this rejection was a crushing blow.
It was a blow I felt not once, but twice.
My mother had also been rejected for hospice her first time around.
Now if you think about this logically, being told your loved one likely has more than 6 months to live should be a welcomed suggestion, right?
It’s tempting to believe that–if you haven’t weathered the especially emotionally-perilous minefield that is neurological deterioration, that is.
But once you’ve spent months, years or sometimes decades watching your loved one slowly inch down the hot, unwaxed metal slide of brain disease, you might not be waiting at the end of said slide with open arms.
Our general ethos towards illness, health and death has led us to believe that each of us has a right or a duty to ourselves and our loved ones to “fight like hell” to survive.
And, due to advancing technology and that ethos, it’s hard not to continue existing.
It seems there’s always a distant uncle in Oregon who shares an article on your Facebook feed about a 9 year old boy whose tumor DISAPPEARED after eating only cottage cheese and organic honey; or the well-intentioned check out woman you always find yourself chatting with way too long who gives you a tiny glass vile of oil blessed by the Pope; or the cardboard boxes brimming with crayoned, adoringly misspelled cards from local schoolchildren instructing you to “Get Well Soon” and drawing pictures of themselves wearing t-shirts in support of “Your Fight!!!”.
There’s often a clinical trial you might be eligible for.
There’s frequently a “well, we could try…. (fill in the blank)”.
There’s sometimes a referral to another specialist.
With so much encouragement to continue; with so many possible options to go on, it’s hard not to continue.
Think about it–if you choose that new drug or new doc or start raising cows and bees so you can have unlimited supplies of cottage cheese and honey, at least you’re doing something positive.
You’re not going to let it beat you!
You’re a survivor , damnit!
So if that’s how we define those individuals who “do everything possible” to prolong their often not-too-long lives, how do we define those that don’t?
They’re doing something negative(ie–wrong?)
They’re choosing to let it beat them?
They’ve lost the will to live?
That’s a tough pill to swallow, especially for people who want to stop swallowing those damned horse pills.
So the decision to enter hospice–to admit that you’ve had enough and have the courage of your conviction to live the last few months of your life however you damned well please is not one easily reached.
Now comes the complication I, my dad, my virtual partner in brain-tumor tumult crime Judy and soooooooo many of us who are caregivers(see also eyes, ears and often decision-making powers of attorney) of our neurologically-irreparably damaged loved ones face.
After months and years and sometimes decades of coping and pushing though and plowing ahead and devolving from working as a team with our partners to going solo–we all reached a point when, icy-veined, wide-eyed, broken and trembling with both feelings of vile repulsion, yet renewed hope and sweet relief, we open our minds to the idea of hospice.
And once we allowed ourselves to even think about it as an option, that tiny little once-horrid thought began to multiply in our mind. And it quickly overtook the cottage cheese and honey cures that had lurked there for so long.
So, after days or weeks or months of debating this decision, we decided to go for it.
And we did it on behalf of our loved ones.
Just imagine finally reaching that excruciating point where you dial a phone number that puts you in contact with a hospice intake coordinator.
Then imagine the amalgam of worry, (relief) guilt(relief) and trepidation(relief) ping-ponging through your body as you distractedly vacuum your house and scrub your toilets twice waiting for someone to come into your house–your den of dementia, delusion and depression–to hopefully, finally give you the control no pill or potion could anymore.
Then imagine them telling you, “not so fast, buster”.
Listen, I get it. It’s entirely possible to be rejected from hospice and still go about living your life without receiving treatments.
Hospice ain’t the end all-be all.
But after being dragged along, alone, by the slow and suffocating current of chronic, terminal illness, hospice is often the lifeline we need to keep us afloat for the last few lengths of the journey.
And when that line is tossed out to us, and we decide to grab on, only to have it just inches out of our reach, it can leave us thrashing about, even more hopelessly than before.
You’re left in purgatory, really.
Sometimes purgatory is worse than hell.
—–Stay tuned for Former Hospice Rejects, Part 2 where I discuss how Jamey and my mom were finally accepted into hospice as well as delve into the many challenges people with degenerative brain disorders face in the last years of their lives.