28. Hospice
What it is. What it isn’t.
Terminal cancer.
Those words came out of nowhere. I’d been feeling fine — so it wasn’t like I was sitting in a doctor’s office because I found a lump, or was unusually fatigued, or had some unexplained bruising, or a prolonged cough — Nope, I was there for my annual physical, the first I’d had in two annuals. (My editor just freaked at how I used the word annuals, in this sentence.. Gotta love me, Andria).
Like many, many people, I didn’t go for my routine checkup in 2020. The reason, of course, was Covid. I didn’t go on my family’s annual vacation to Wells Beach — because of Covid. I didn’t celebrate birthdays, or Thanksgiving, or Christmas or New Year’s with family or friends — because of Covid. I didn’t do any of the fun stuff OR the important stuff — because of Covid. Everything I did or didn’t do back then was because of that wretched disease — the fear of catching it — and dying from it.
Isn’t it ironic?
Yeup – a little bit.
I’ll never know if my funky alk phos became funky in 2020 — or if it would have been found on that year’s pre-physical labs — or if it would have mattered if it was found. But I do know this — by the time Dr. Wonderful learned about the elevation and ordered additional tests and scans, it was already too late for me.
Now, what?
There wasn’t going to be a cancer treatment plan for me — there was going to be an end of life plan for me. Within a matter of days I went from planning weekly dinner menus for the family to planning a funeral — my funeral. I went from talking about the framework for my next series of books to putting the word ‘hospice’ into my daily lexicon. As one might expect, I didn’t like the sound of the word or the way it made me feel. Just saying hospice out loud caused ripples of fear. It should have, after all, hospice is that place – the place where people go to die.
Right?
Sort of.
This blog isn’t intended to inform anyone about hospice. This is simply my feelings about the program based on what I thought before, and what I’ve heard and experienced, firsthand.
I mentioned in an earlier blog that my hospice social worker handed Tim a thick, shiny, pocket folder holding pamphlets and scary-named forms on her way out the door after our first meeting. That was December 10th and I have yet to open the folder.
Tim, on the other hand, opened it and read a pamphlet before The Women of Hospice were off the driveway. Within minutes of his speed-reading event, he wanted to explain the stages of death and dying — not because he had some perverse need for a bit of show and tell — but rather because I’d previously posed a casual wonderment if there were hospice stages like there were grief stages.
Should hospice cause marital strife?
“We should discuss the stuff I read,” Tim said while waving the pocket folder in my direction.
“I’m good, thanks.”
“It might help if you knew about the stages. It really puts things in perspective and—”
I cut him off. “Tim, if I want to know about the stages of death and dying I’ll read the damned pamphlet OR better yet, I’ll experience them firsthand.”
Silence.
He sat on his mission chair and waited for me to wade into a discussion.
We both knew it was going to be a long wait. I don’t like being pushed into difficult conversations — I much prefer they be played like a game of Chess — each of us making a statement, a brief one, the kind a departing pawn might make as he moves from the front row.
Then, after we’ve each made our opening moves, or salient points of discussion, I take time to think — or strategize — or fume. Tim knows this, but on that day he opened the Chess game with his knight — he moved the horse head piece from the back row, jumped a pawn, slid a space to the left and staked claim three rows forward. I’m sure there’s some Russian name for that opening move, and I respected Tim’s bold attempt, but I offered a simple, “Nyet,” and went back to the silent treatment. Within seconds, I broke. “Is there a reason why you’re pushing into this?”
“The pamphlet really put things in perspective for me.”
Silence.
“It said you are doing work, the hardest work you’ll ever do — and you’ll be doing it up here,” he pointed to his head, “and that you’ll be doing it alone.”
“Not so far.”
Silence.
“And the pamphlet explained that even if you shared your thoughts, none of us could really understand what you’re going through.”
“So the point of this discussion is what exactly?”
He groaned. He continued to push in. “The pamphlet said the people in your life have to accept that your world has changed — and that you’re not thinking about the long-term — and you may not be interested in the same old, same old, and—”
I pushed deep the tears I needed to shed, “I’m not interested in this back and forth. Can we be done, now?”
He lowered and shook his head a bit, “I’m trying to help — the pamphlet said that’s my job, to help.”
“Can you please stop helping?”
“Okay, but we’ll need to discuss the DNR forms before our next hospice appointment.”
“Sounds fun.”
I watched my poor mate walk away all slump-shouldered. I felt awful. I didn’t want to push him away, but I just couldn’t have the conversation, or even listen to the things he learned. I knew Mr. Wonderful’s need to prepare me was his way of taking care of me — by teaching me. That’s what the whole interchange was all about — but I ask you.
Can a pamphlet really prepare a person for the process of death?
Should a husband have to try?
A shift in dynamics.
Tim and I are partners in every sense of the word. I’m sure people think that I rule the roost and that Tim bends to my will. While it may look like I’m making all of the decisions for our family, the reality is this: Tim and I make all the big decisions behind the scenes, I just move them forward.
So, Tim’s pushing to have the pamphlet discussion was unusual and uncomfortable — and it signaled a shift in our relationship — and I wasn’t ready for our relationship to change. Tim, on the other hand, wanted me to know he was taking the lead, that he was going to step ahead of me on occasion then wait for me to get back into lockstep with him.
We learned pretty quickly that I wasn’t prepared for his breakaway and didn’t like being left behind — especially since this was supposedly my journey.
Reactions are complex.
I don’t know if the pamphlet lists bitchiness as part of the end of life process, but I know it’s been part of mine on a few occasions, and Tim has borne the brunt of it. It hurts me to the core that we have to have uncomfortable conversations, and that after 35 years of marriage we don’t know how to have them.
We’ve had ‘what if’ discussions in the past, the most significant ones took place during the days before my brain surgery. We even wrote letters with our wishes about DNR and the removal of life-sustaining machinery. Understatement here: it was amateur hour, both in terms of medical and legal knowledge.
To help make our decisions, we tossed a few scenarios out for discussion — each of which had one of us in the hospital with state-of-the-art equipment all around, and brilliant medicine-men-and-women testing, analyzing, and counseling the aware partner about what could or could not be done for the unaware partner. We made our decisions, signed the letters, sealed them in envelopes, and wrote our names and dates across the seal so everyone would know they hadn’t been tampered with.
Yes, we’re dorks.
That was a helpful exercise back then, but it has no relevance to what’s happening now. It’s showtime and emotions are running high, and we haven’t had time to practice our routine, and build confidence that either of us knows what we’re doing. That’s why the seasoned husband and wife team were out of step with one another.
We’ve gotten better over the past few weeks because Tim has adapted to a big change in the way I normally do things. My lifelong philosophy that ‘knowledge is power’ doesn’t hold firm anymore. I want to know stuff, I just don’t want to know everything — all at once. And I’ve adapted to Tim’s need to take the lead on a few things — and that his push to talk about stuff is really part of his coping mechanism, a really big part.
Joining hospice.
I’m not sure if joining is the right word, but it’s the one I’ve chosen. Before a patient can sign-on, hospice has to receive some sort of report from a physician stating he/she has made the clinical determination that you are dying. Once hospice receives the information, they make their own determination.
THEN THEY MAKE THE HOUSE CALL.
During my wait for that call, I imagined the worst. I was sure the meeting would take place behind shrouded windows with me at the pointed-end of a scythe, perhaps a plastic one leaving the real deal for a later visit by the Grim Reaper. I would be forced to cede power and control to strangers who would stand guard — UNTIL THE END.
I couldn’t have been more wrong.
Hospice workers do not want power or control over anyone — certainly not over a person who is in the dying process. Hospice nurses are kind, dedicated souls who are bound to a belief that a patient — a human being — a person who is somebody’s everything — should be regarded with dignity, and kept as physically and mentally comfortable as possible during the period leading to, and during their passing.
Comfort is more than pain meds.
I’ll give an example: Dying from bone cancer is painful. I was told by an oncologist that my death would be excruciatingly painful. So right off the top, Dr. Wonderful and Nurse M focused on getting my pain under control — and keeping it under control.
When 4 doses of Tramadol didn’t keep pain from breaking through, they upped the number of doses to 6 per day. And when I complained that I was sleeping way too much during daytime hours, and was unable to clear my head enough to write my blog, I was encouraged to try going without the 1 AM dose.
My medical team showed commitment to my physical health, but they also focused on my mental health. They realized the importance of my writing. They knew that my blog is helping me in many ways and that it is a fundamental part of how I will maintain a good quality of life — for as long as I am blessed to have one.
Hospice is a beginning and an ending.
Most everyone equates hospice with the ending of a person’s life. I have come to learn that hospice is really a beginning — the beginning of a person’s final journey. More than that, hospice is the beginning of the most focused care a person will ever receive.
Hospice nurses work way outside the ‘normal’ healthcare box because their work begins at the core of a person — at their soul. These nurses don’t try to save their patients. They know they can’t. There’s no bother with pretense, no reason for hand-wringing, no avoidance of difficult conversations. They come into the relationship knowing that EVERY conversation is going to be difficult.
Setting boundaries.
Every question asked by a hospice worker is asked of me. Every bit of focus is on me — on how I’m feeling — and whether there is a way to make me feel even better. The concerns and worries of Mr. Wonderful and my daughters are listened to with empathy, and they are answered fully and kindly, but everyone in the room is reminded that I need to lead the discussions and make the decisions — for as long as I am able.
That’s why my signature was required on the Do Not Resuscitate form, and the Do Not Intubate form, and the Do Not Transport to a hospital form. It was the hospice social worker who gave the general explanation of what those forms mean during our first meeting, but it has been my hospice nurse who has been in the weeds with me when I have questions about what they ‘really’ mean.
And I’ve had many questions.
“Can I change my mind about THE FORMS?”
“Yes. You are in control of your care.”
“And what about Tim or the girls, can they change things if I’m incapacitated?”
“Yes. That’s why it’s really important that they know your wishes and are prepared to honor them.”
“Okay, so let’s say I have the dreaded bone break, do we call 9-1-1? Cause you know, it’s a broken bone.”
“Well, if it’s a compound fracture and you’re bleeding then you’d call 9-1-1 and then hospice. We would send someone and explain to the appropriate people that you are a hospice patient. That’s important for the ER staff to know. They will take care of your emergency needs, whatever they may be, get you comfortable, and then they would send you home.”
“To die?”
“Given your advanced stage of cancer and overall bone deterioration, most likely yes.”
“And if I had a stroke or a heart attack, do we call 9-1-1?”
“No, you call hospice. We’ll assess the situation, tell your caregiver what to do, and send someone to your home.”
“So basically, if I stroke out or have a heart attack, that’s it. There’ll be no one coming to render aid, no one coming to try to save me.” It wasn’t a question, though it felt as though it should have been.
Nurse M leaned toward me. “That’s what the Comfort Kit is for. The morphine would be used to keep you comfortable. Everything about hospice is about the comfort of the patient.”
I wasn’t finding the subject matter very comforting and took a not-so-casual look at the clock.
Nurse M caught on pretty quick. “When was the last time you took Xanax?”
“Eleven last night.”
“You can take one now if you’re feeling anxiety.”
“Way ahead of you,” I had the pill bottle already in my hand.