17. Worst Weekend of My Life
Last Friday kicked off a banner weekend of information gathering, option weighing, decision making and unmaking and remaking — it ended with heart wrenching grief.
At noon, Mr. Wonderful opened our front door and welcomed in two women — The Women of Hospice I’d labeled them when we learned they’d be coming. I had a nanosecond to nonchalantly size them up before introductions were made. The Women of Hospice were nothing like the images I had conjured up in my mind — angels of mercy wearing white Grim Reaper garb, magically materializing in my home.
These end-of-life-professionals were young, probably in their early thirties, and very pleasant. My social worker was dressed the way my daughters dress for work — business casual — slacks and sweater, and she was wearing a kick-ass pair of ankle boots. My nurse case manager was dressed the way nurses dress for work, comfy pants and matching top with the ubiquitous stethoscope slung casually around her neck.
While they removed this and that from their carryalls, I silently questioned why these millennials chose to do this type of work. Why would they choose to spend their days helping people die? My question hovered over the nurse because let’s face it, she is of the care-giving profession. And people who join the nursing ranks usually spend their days helping people heal or live through some critical situation — and yet here was a lovely young woman, all fresh-faced and scrubbed clean, preparing to help me die.
And then there was the social worker, another lovely young woman with a boho-chic vibe, who knew how to talk the talk of death and dying. She handled the ‘uncomfortable’ topic by striking the perfect balance of I’m sorry that this is the way it is, but this is the way it is. Then she assured me that they can help with all of my end of life choices and challenges. And I totally believed she was committed to doing that — for me — a complete stranger. What good fortune that I have these women leading my hospice team.
Now for the inside of the room recap.
Let’s have some fun with it.
Tim and I board a plane — nope, we board a Learjet and find The Women of Hospice in the cockpit. They go through their pre-flight checklist, confirm takeoff with flight control, and announce, “Lift off.” We’re flying at 36,000 feet, when the social worker goes on autopilot with an overview of what hospice is and what it is not. She delivers a perfectly paced and informative presentation, one I suspect she’s done often — once too often in my opinion.
In a nutshell, my words, not hers, hospice care prioritizes comfort and quality of life for terminally ill patients by reducing pain and suffering. Listening to the possible and probable scenarios of how I might progress from hanging out in my comfy recliner to climbing onto my future deathbed increased my emotional pain and suffering immediately, and sufficiently. I found myself checking the clock to calculate the time before my next Xanax.
There was a bit too much left for my liking.
Some background on what I thought about the process of dying before I learned about the process of dying: I’d get sicker. I’d climb into a hospital bed that had been set up in my living room. I’d get morphined up and slip away.
I admit I gave considerable thought to what pieces of furniture would have to be moved to accommodate a bed in my living room thereby converting it to my dying room. Those who know me know that I like the way I have my living room arranged and they won’t be surprised that I angst over the looming rearranging. I’ve spent considerably less time thinking about who would care for me whilst I was in suspended animation upon my death bed. Okay, I gave it some thought, but doing so caused heart palpitations, so I quickly moved on to other things — like blogging and gift buying. (Don’t tell Mr. Wonderful, but I went a bit overboard with Christmas gifts. With or without a hospital bed in our living room, we will be hard pressed to get all of the ‘last gifts I’ll ever buy’ into our 14 x 18 foot room).
I digress.
Back to the point of this blog. The social worker-pilot began our descent toward Earth. If I choose to do the whole home death routine, there would be daily visits from my hospice team, but that would leave 23 hours each day to consider. If I didn’t want my husband and daughters to do the bulk of my health care work — I do not, thank you very much — then other agencies would need to come in. It was ‘suggested’ that given the state of my bones, trained health care workers should be hired and they usually work an eight-hour shift at a hefty hourly wage.
I let Tim do the calculating because I suck at math and because I had another question, “So, if I wanted to stay here until I get really bad, could I then go to a super-de-duper assisted dying facility?”
“Assisted living facility,” the nurse corrected.
“Potato. Po-tah-to,” I grumbled. Anyway, the answer to my question was, “Yes ……. but.” I hate those kind of answers on a good day — this was not a good day.
The Women of Hospice tag-teamed on this topic of discussion. “There are facilities. Most accept patients prior to the transitioning phase.”
I wasn’t ready to hear about this phase. The other professional read the room and continued on.
“Where you can go is very much dependent on what facility has an open bed. Every facility will give you care and comfort ……. but ……. because Covid is on the rise again, you might find that visitors are restricted or prohibited from the facility.”
“So, I could die alone?” I croaked/choked the words.
“Yes.”
I felt my heart constrict and my head threaten to blow. “If I have a stroke right now,” I addressed my nurse, “will you attempt to save me?”
“Yes.”
“Shit.” I looked at Mr. Wonderful and wondered if he was stroking out. I addressed my nurse, “If he has a stroke, save him, cause, you know.”
After about two hours, I’d had about all I could handle. I think I said some sort of goodbye pleasantries, accepted the shiny laminated stuffed-to-the-brim pocket folder of information, reached for the Xanax I so desperately needed, and went into some fugue state.
Hannah, Jessica and Hadley came for dinner later that day and after we’d eaten, we played a Christmas game we enjoy. We put A-Z letters into a brown paper bag and take turns drawing a letter. Then we set about naming some Christmas-related thing that corresponds with that letter. (BTW, if you ever play and get the letter U, use the word unwrap).
Anyway, after the second game, I sat my sweet, loving granddaughter down and told her the news. The hopeful look on her face that she might have misheard, the tears that filled her eyes and ran like rain when she realized she hadn’t, and the hug that lasted an eternity — broke my heart.
I’m sure the pain of it all will last an eternity, for Hadley.