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.
Headed Into Overtime 
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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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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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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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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HI Kim, I thought I’d add to this discussion with a new development in our world, ( planet brain cancer) I just dumped the nearly 5 hour travel burden to the university medical center that has been my husbands treatment and check up destination since June 2012.
It’s where he ended up after he got his brain tumor Diagnosis via an MRI at a much smaller nearby hospital. He’s had two surgeries there, we lived nearby at the AMC Hope Lodge for almost two months while he had 38 rounds of radiation. We’ve traveled back n forth so many times I can do it asleep. My guy has gotten so much worse between the ears he uses a navigator because he can’t figure out where we are going.
I did this because I saw the wreck coming. I just know it’s only a matter of time before he really does jump out of the car in traffic because he’s mad after another lost argument with his oncologist who says ‘nope, no driving, sorry’. He’s gonna blow because no, I’m not ‘coasting to a stop so the brake pads will last longer.’ It’s been crazy and dangerous for too long. I’ve lost him more than once at the truck stop, too. He opens his wallet and gives strangers money.
This has been the topic of discussion in my counseling sessions for a long time, this deciding when it’s not safe to take him down to the hospital so far away. My counselor has been thru this with a family member and she knows when the patient is seeing red, even just for a moment, being in the car with them is really bad. It finally hit me between the eyes that if I’m white-knuckling it just getting him to the store up the highway for bananas and a burger at the cafe, what business do I have anymore dragging him so far from home and into a situation that frightens me overwhelms and angers him, especially since he’s been crystal clear that he wants no more treatments. These trips are for that dreaded limbo called ‘watch and wait’, they are just for an MRI.
I told the oncology nurse last May about this problem and got no answers, can’t blame her because there aren’t any transportation options that will work for us. Maybe she’s been waiting on me to tell them what I did yesterday. He’s dangerous anywhere but right here at home and sometimes it’s just as bad but at least we aren’t in the car so,when he wants to bolt out the door, it’s not while we’re doing 70! To him, leaving is leaving, a door is a door and when he gets angry, that energy has to go somewhere.
So i just did this and haven’t heard anything from the oncologist office other than yes, they will cancel his next appt. I was a teary mess yesterday but I did get lots of affirmation and support from my online caregiver friends, also taking care of family members with brain tumors. I haven’t got the right words yet or the right way to tell my guy that he doesn’t have to go down there anymore.
Thanks for listening!
Judy
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Oh, Judy…..you know I get it. I remember the “last” visit with Jamey’s oncologist when she referred us to hospice(the first tine, at least). I remember the drive home(ditto on the doing it in my sleep, however no where NEAR as brutal a commute as you guys had). I remember being acutely aware of how it would be the “last” time I’d have to do that drive(I am a notoriously nervous driver—especially in cities. Up until I had to hide the keys from him because he was unsafe, Jamey always drove.)
And I remember just feeling….relieved.
We were lucky enough that the two hospitals he had treatments at were both in Philadelphia—only about 30 mins away. It’s really weird now when I’m traveling the route I used to take when I drove him in so many, many, many times. I always go through one of the far left toll booths. Always get in the second in from the left lane when merging after the bridge from NJ to PA. Always stay to the outside lane because it will eventually lead into merged traffic. I feel this odd blend of anxiety and nostalgia when doing so. It’s like connecting with a friend you knew from childhood—it’s comfortable and familiar yet alien all in one.
It’s funny what eventually begins to pass for “normal”, “tolerable” and “not too bad, considering…” with brain tumors. You mention your guy trying to open the car door while driving 70 mph. If anyone without a BT did that, we’d probably seriously think about having them committed!!! And yet we somehow learn to live, to adjust, to gauge when something is “bad….but not horrible.”; “risky, but not dangerous”. Our norms, expectations and rules about life shift so much over the course of this disease.
I know you’re feeling torn about the decision, but in the end you know you did the right(not the easy, but the right) thing for you and your guy. You both deserve peace, calm and the bizarre, insane, quirky happiness of living the life that’s been dealt to you.
Please continue to reach out and know I’m thinking(and praying) for you both.
—Kim
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Hi Kim,
Well, it’s done, it really is! my guy no longer has to endure the long trips to his treatment site, and I don’t have to try and drive with one hand on the wheel, the other on him -as if that would really do any good if he decides he wants out in the middle of rush hour traffic.
I knew We weren’t going back and I had already cancelled his next appt. with his oncologist but I wanted the blessing,so to speak, – and a handbook on how to do cancer this way would have been great, nope, they don’t exist- of our family doctor, now his one-stop shopping for all things medical and for a referral to (?) in the hopefully- far off future.
We’re in a lull but this brain tumor monster is gonna come back, wake up, grow until it fills the empty space in his noggin, throw him into grand mall siezure land, whatever it’s eventually gonna do to him.
He’s been as close to steady state as a – kind of – low grade tumor patient can be for awhile now. ( his tumor is complicated under a microscope). Losing weight, metabolic issues, getting more sedentary, has an occasional cough that makes me do a double take, moving slow, the disease has aged him so much. He’s only 59, he was always so active and should be leaving me in the dust on a mountain bike but now I think of him as more like a much older husband who’s just running out of gas.
My guy doesn’t want to do anything as in chemo, clinical trials, or more surgery when his cancer starts giving him fits so he doesn’t even have an oncologist anymore. That’s the unnerving part. He’s got really dangerous cancer and no oncologist. The insurance part, the financial aid, the co pay write offs, all those rubber bumpers on his buggy that ensured seamless coverage and let him sail thru uber expensive diagnostics at the big fancy hospital with no bills are gone. And they can’t be switched on and off then oh never mind, we’d like them back, please…some of them don’t even exist anymore except for established patients on a first name basis with the financial aid office. He’s the six million dollar brain patient so to have that part gone is also scary, not to mention that getting that all in place was a mountain of paperwork that I had to do. But as his doctor said, he doesn’t need all of that anymore, his insurance will cover what little monitering they do to him now. To me, it’s sad because it’s yet another way of of saying goodbye to my man in slow motion,
Anyhow, He will just keep being monitored locally and with as few MRI’s as possible, maybe none because When he starts to crash this time then it’s hospice. That’s the over simplified plan, anyhow. Pretty strange to be praying that it works out like this.
It was a tricky conversation, the local doctor had enough of the backstory that it was possible to present this change in his plan of care as an option for him to consider even though it was already a done deal. She did such a great job of including him in this decision made about him, honoring his wishes and also for reasons ( safety issues) that he wouldn’t be able to understand and those were coming from me.
So I wanted that ‘ok, it’s fine to do things like this’ from them locally because OMG…I’ve cut ties with the oncologist by telling them we aren’t coming back, so the support I would have gotten from the nurse and social worker isn’t available either. It’s ok, it was waning anyhow.
It’s such a huge hospital, so many patients, so,many brain cancer patients, just a few neuro oncologists for all of them that they operate on this triage principle and really, it has to be that way.
If you’re new, raw, in the thick of treatment, there’s lots of support. If you’re on the ‘watch n wait’ plan, and going on year 3.5 of this, (its a very strange life) it’s easy to get lost in the shuffle. I was impressed that his oncologist remembered ( i.e. kept good notes) as much as he did, just seeing him for 15 minutes twice a year. I was impressed but alarmed at how tough the visits went, my guy being so ‘off’ from the meds, from being out of his routine and very scared to be looking his cancer in the face.
I dreaded the day we got the last bad news and what if Michael was still with it enough to understand that he was toast and us being so far from home.
Well, it ain’t gonna happen like that. No,way. He’s home, he’s doing some gardening, filling the bird feeder, taking walks, eating whatever he wants, sitting with the locals at the cafe and drinking tea in the mornings, napping and doing crossword puzzles in the afternoon. I’m looking to get him a small greenhouse that can be heated so he can putter in it on nice early spring days, getting seedlings started. He’s lost so much but he can still do things like this. We just aren’t going many places and it’s ok. This life is ok, I’m never bored here, I’m grateful that I don’t have to be at a job and also be taking care of him. You said it, quirky, bizzare, insane, it’s all of that and also with some carefully choreographed exits my part to somewhere else, but not far away, if he’s having bad moments. Low key stuff right here is good.
It’s a hazardous combination, him and being in vehicles, even the ride home from the local doctor the other day couldn’t be over soon enough, and I was barely able to finesse things around by saying – luckily- the right thing- and get him calmed because he equated no more cancer treatment and check ups with ‘I’m all better now so give me the keys’.
As best we can, ( because dying from brain cancer can get really ugly in the end) We’re doing things with him the old fashioned like they used to do back in the day with those patients with which there was nothing else to be done. So for now, My husband with brain cancer is ‘taking air.’
I am so grateful for your prayers,
You are also in mine
– Judy
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I felt better after writing that post and it was great to see your reply sitting in my box. Thank you! Will let you know how things shake out, my guys check up with the family doc is Monday and I already gave them a heads up message about not going to the cancer center anymore. I guess I’m going to find out if it’s an automatic ticket to a hospice evaluation for him. I really want flowers or a sympathy card, a nice knowing you, thanks for everything you did message from the cancer center. *snif*, you know, it’s the end of a relationship!
Hoping someone else out there gets some benefit from our dilemma and whatever solution comes of it. I’m waiting for the releif to hit me of knowing we really don’t have to go back. That we can have a fall and then a spring season free of the anxiety of that trip.
So after two years of evaluations and being on a long waiting list, He’s now in the HCBS program under the category of physical disability. A happy side affect of that was it got his medicaid rolling again as a supplemental. It will also get him used to having a nurse come visit him twice a month so when he does go into hospice, it won’t be this big thing, I will just keep calling it his ‘Cadillac insurance’ which is how I got him to agree to the HCBS program at all. The way he is now, if we don’t ever use the ‘H’ word, that would be best and the nurses said they would just call themselves ‘chore ladies’.
And he gets 30 adorable TV dinners – of his choice!- that look like airplane meals delivered to the door each month.
Peace,
Judy
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