Former Hospice Rejects(Part 1)

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.

7 thoughts on “Former Hospice Rejects(Part 1)

  1. My Mother, who also suffered with dementia, was in hospice care and then released from hospice care only to go back in to hospice care the a week before she died. It’s a roller coasters for sure, and not the fun kind. I pray for your parents all of the time, way too young to go through this.

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    • I’m still trying to understand the ins and outs of hospice to try to write more about it. It seems really arbitrary sometimes who’s appropriate and who’s not. Before Jamey passed, he was approaching his “renewal” period(was 3 months? I forget now) and I remember discussing with the social worker what our options were if they decided to release him. It never got to that point, but I remember feeling so helpless. He’d become aggressive with his daily living skills(with me, but not his care worker) and I didn’t know he was safe to be in the house with Caeley for much longer. Scary.

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  2. Hurrah! Hello and Thanks for revisiting this topic. I’d like a full firehose of holy water, please…make that Epiphany holy water, the good stuff. A cure? Naw, i just want courage on my end and understanding on theirs because hospice is a scary thing to start, and to have to go through that more than once !?! Ugh.
    We need hospice services that aren’t so dang stingy.

    There are many of us banging on that door on behalf of our drooling significant others and we are beyond the tshirts from the BT cure fundraiser, the clinical trials, even the biannual MRI. I am in an online group of Hardcore, been at it a long time, elite caregivers of our super impaired spouses with a terminal illness. Our spouses are dying, some quicker than others but they all have one foot in the next world and flipping out on us in the meantime, which is just that. Mean!

    Talking at a picnic about hospice aspirations is a conversation killer , but in the group that im so very grateful to have found, we can talk amongst ourselves about all things hospice and we celebrate things that engender looks of pity from the average person. ‘Elevated toilet seat a success! Told him it was for me!’ You know, those little victories that we earn on our own.

    There are also lots of fingers crossed on a regular basis that this or that forum member gets the hospice services they need. They are done with treatment, getting affairs in order, looking at headstones because they’ve all been warned that the BT downhill slide is like they one day fall off a cliff. We yak about this stuff and can all agree that we would like to get thru the hospice narrow gate a little sooner.

    Thanks and God Bless,
    Judy

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    • Hi Judy—curious—is Hardcore the name of the caregiver group(I tried googling it and came up with some disturbing results so thought I’d ask). Im still not sure how Jamey and I or my mom and dad for that matter stumbled into hospice. Somehow my mom’s been in it for a year and a half yet has never been up for re-evaluation. I don’t get it. Then again, my dad pays for her to be there yet with Jamey’s care, Medicare did. It’s all very confusing to me still, and I feel I know a bit more than others.

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  3. Kim, I continue to be an avid follower of your blog. You always get it right and say it with pizzaz. I’m sure you’ve read “Being Mortal” in which the author describes much of what you’ve written. I make all of my friends read it. My son’s girlfriend’s mom has Alzheimer’s too and she’s my age (55). I going to share this latest post with them. Thanks so much for the wisdom that you shouldn’t have to have at your age.
    Elaine

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    • 55!! Oh Lord! That is so young. I remember having a student years ago come up to me after class and ask me if I knew anything about early onset. He was 18 and I think his mom was early 40s and in the last stages. I’d never heard of early Alzheimer’s before then. And, of course, having a parent with it leaves me in a state of panic every tine I forget where I put my car keys.
      I haven’t read “Being Mortal”, no. I will.
      Hope you all are well and enjoying your travels!!

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  4. Haha….oh goodness, ( yeah, don’t ever Google ‘hardcore’ 😱) sorry I wasn’t specific on the caregiver website, it is; cancer care online support groups and the site is cancercare.org The forums are moderated by a CSW,ours is, I think, out of Sloan-Kettering, NYC. A online BT caregiver friend told me about this site, said she learned of it from her husband’s social worker at Duke. We were both refugees from one of the more public sites that just wasn’t doing it for us. Too many trolls, no real moderator to keep things on track. And it is a site oriented toward treatments, but with lots of folk remedies and what I consider snake oil cancer ‘cures’ . Not a place to talk too much about being past any more treatments or refusing them, either. I needed to talk to people who were also seeking peace for their hubbys or wives via hospice. That’s too scary for a newbie. It sure was for me, back in 2012. I never thought I’d be saying the things I am saying today.

    I really like this site, it’s not out there for all to see, very private, the groups are very small ( i.e., I am in one group and my friend is in another group of about 8-10 who also are BT caregivers.
    each session is three months with a month break. When you sign up for a group, they ask for some info to figure out which group best suits your situation. I can access it thru my gmail which is easier than going to the site. Really is a bright spot in my day when I see those new posts.

    I am in ‘brain tumor caregiver’ along with about 8 active posters and a few more who post little to none but who have introduced themselves. I’ve been with a lot of the same folks for almost two years, unfortunately things seem to be crashing/burning now in several of these folks situations.

    The billing for hospice is very confusing! I’ve heard of coverage ranging from real good to almost none and hey, we want all your money, too. Here’s $725 to cover the ‘impoverished spouse’ Medicaid clause.
    Arbitrary is right, if you ever look up all the factors that affect which agency pays for what and the out of pocket costs, geese…an ‘if/then flow chart for hospice elegibility would be a total maze.

    Medicaid, to an extent, is like that. I do appreciate their efforts to mold a complicated government program to fit a particular situation and that has been the case for us. But nobody can ever tell me about coverage until they send the bill in to…..I don’t know….some man behind a curtain operating a row of levers?

    The baffling way hospice happens for one individual vs. another seems very close to,the clear-as-mud explaination of how my husbands Medicare and his Medicaid will cover him and what they will want from his monthly SSDI check in order for the Home based community services program to happen. It could be very expensive but really, to keep him calm, get him used to a nurse and a home health aid being in his orbit will be worth it.

    Thanks for your time and the use of this space as another resource. What wonderful support! Nothing like talking to one who has been there, really, I discovered your blog shortly after you started it and it sure has helped me navigate this awful minefield of brain cancer.

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