68. Choosing a Place to Die
Full circle.
Last December, I wrote in blog 28: Hospice — What it is. What it isn’t.
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 … While they removed this and that from their carryalls, I silently questioned why these women chose 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.
I claimed the get-together that day as ‘mine’ and pushed in on concerns I had. Granted, the things pushing in on me right then wouldn’t be part of my ‘living or dying’ plans for a measure of time, but they were of immediate focus because they held my fears. I remember broaching the topics with a mix of trepidation and petulance, “Who will take care of my personal needs when things get bad — when do I start getting all morphined up — when will I crawl onto my deathbed — where will my death bed be?
I was gently nudged away from all that stuff by the professionals because there were way too many important things to consider — things like Do Not Resuscitate, Do Not Intubate, Do Not Transport To A Hospital — and do you even want to be a hospice patient?
Some big-ass stuff, for sure.
As soon as those things were decided (within a week’s time) and my signature was on the dotted-death-line I got down to the business of being a hospice patient — whatever the hell that was going to mean. As it turned out, it meant a hell of a lot, enough in fact, that I wrote a book about my experience. Now, one would think that pushing-in on a new book would, perhaps, keep me busy — too busy to obsess about possible furniture placement at 183.
One. Would. Be. Wrong.
Before we move on, here’s a bit more ramble from blog 28. You should note that these words have come around and around and around, again and again and again on a slow and steady loop.
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 … If I choose to do the whole home death routine, there would be daily visits from my hospice nurse, 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 … 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.”
I didn’t have a stroke — I had six really good months of living.
But, I’ve turned a corner and it’s time to decide where I will be when I die.
I don’t know how I know — but I know.
Nurse M waved at me through the glass of my front storm door Thursday morning. I waved her in with a smile. She said what she always says upon entry, “So how are you doing?”
“I’m dying.” My response was curt and accompanied by an immediate well of tears.
Her medical backpack found the floor with a bit of a thud, her eyes found mine, her ass found her seat. She leaned in — quickly assessed the immediacy of that comment and said, “Yes, but not this minute. So, tell me what’s going on.”
Tears flowed from my eyes, “I’ve been living with a terminal illness. I am dying from it now. I can feel it.”
She nodded and left me to fill the silence. So I did. “My spine is weakening. And I know the biggest worry is a catastrophic event, but for the first time, I feel like the cancer has a really strong hold on me, and I’m not physically able to keep up with its pace. I’m no longer able to go toe to toe. I’m no longer able to push back as hard as the cancer is pushing forward.”
“Tell me what’s happening.”
“Everything is getting harder. Getting from my perch to the BR is more of an effort. Making it through a sponge bath takes so much out of me. I have to break the process down into little bits and rest in between. The exertion causes heavy breathing and it takes some time before everything regulates itself. And then there’s the spinal weakening. I don’t know anything for certain, but I feel like I’m behind the eight-ball on that process.”
Silence.
“Sunday marks my sixth month. I think I might get another month.”
Nurse M leaned in — all-in — and said, “You know your body and your assessments are the most important ones. You’ve identified obvious signs that things are happening — changing. That’s part of the story, but let’s look at a few other things. Your vitals are strong. Your voice is strong. You are still eating and drinking and sleeping and managing your day to day personal care and you’re still blogging and your pain is being managed. Those are also parts of the story.”
“And those are the things that you watch?”
“Yes.”
“And when those things start to change, we’ll have more of the story?”
“Yes.”
Silence. Lots of silence.
“I think we need to have The Talk. I think I need to make some plans about where I’m going to die.”
“Okay.”
I was off and running.
“I really don’t want Tim and the girls ‘caring’ for me. I’d rather have them sitting by my bedside holding my hand and telling me they love me. I don’t want them doing the ‘other stuff’ — for a lot of reasons, but one concern I have is the state of my spine and the fragility of my bones. God forbid there’s a break while they’re moving me, or whatever — I don’t want them carrying that shit fest with them for the rest of their lives.”
“Okay, let me explain what services you’ll have from our agency. As things progress, I’ll up the number of visits I make each week and let you know when it’s time for bedcare. You can do that at a facility or you can do that at home. If you stay here, I will visit you Monday through Friday and spend an hour or so with you, and our weekend person will visit on those days. Also, one of our healthcare aides will visit you seven days a week and take care of your personal needs.”
“I want a catheter.”
“Okay.”
“And the other hours?”
“Tim and the girls can be trained to do certain things, but if you or they don’t want to be part of your care team, there are agencies who have people who can come in. Usually, they send someone for an eight-hour shift.”
“Like an overnight shift?”
“Usually.”
Sheryll Bodine made a quick appearance and started doing some gozintas. I sent her to relax by the cement pond because money isn’t going to be the determining factor in this life and death decision. I pushed into the important question, “Once I take to the bed, how long before I die?”
“Every passing is different, but two weeks is a good benchmark. When you’re discussing this with your family, start with that timeframe. If they decide to be a resource, have them consider whether they can handle that length of time helping with your needs, that includes administering pain meds. It’s going to be a very emotional and difficult time for them.”
Silence.
“And if I decide to go to a facility? Let’s face it, there’s a lot to be said for being in a hospital setting where there are medical professionals who will take care of me. And Tim and the girls and Mom and Marchrie and family and friends could skip the physical care and just sit with me.”
Sigh. Hers. A lean-in. Hers.
“Let me tell you what the current situation is with visitation at the two facilities you and Tim selected when we first started discussing this. The small facility with private rooms is allowing visitation for two people from 10 AM to 6 PM. Currently, there are no overnights, and since that facility isn’t part of our hospice program, I wouldn’t be part of your nursing team.”
“New people,” I sighed.
“Yes. As for our facility. There are very few private rooms, so you are most likely to have a roommate.”
Audible groan.
“The visitation schedule is assessed and modified daily because of the uptick in Covid cases.”
My heart sank.
I’m not sure I said any of this out loud, but I thought it.
I do not want to die alone and I sure as hell don’t want to die with a stranger watching me.
Nor do I want to watch someone else’s death.
Dying should not be this fucking difficult.
I asked Jessica if she had any thoughts on the subject of where I will be when I stop living. My sweet girl smiled behind her mask and said, “I’ll do whatever you need me to do, Mom. Choose what’s most comfortable for you.”
“We should probably have a family discussion on all of this. Maybe this weekend.”
“Okay.”
Nurse M let the tension settle a bit then got back on track. “Okay, let’s check your vitals.”
I was Stable Mabel — although I felt anything but stable.
The quintessential homebody.
It is sooooo beyond the pale that I would consider dying outside my home — the place where I lived my life — the place that shrouded and protected me during my most vulnerable times — the place that offered comfort above all else. And yet, there is an absolute desire — an absolute need — to be elsewhere when I draw my final breath.
Why?
Because it would make things so much easier on everyone else.
Maybe not the best considerations, but there you have it.
Aside from the personal care and emotional strain aspects for Tim, Hannah, and Jessica, there’s Hadley to consider. And believe you me — she is at the forefront of every thought I have and every concern that bubbles up. What would be best for a seven-year-old — for this seven-year-old — for our seven-year-old?
Hadley is my granddaughter, but keep this in mind — her formative years were unique and all-consuming for Tim and me. The child lived with us for 2,190 days, but who’s counting? Then she moved next door and has used that location as a launching pad back to my house for the past 617 days. To say Hadley has had a major dose of MammyGrams in her short life is an understatement. To say my death will hit her hard is a profound understatement.
So what’s a MammyGrams to do?
Pull some threads.
Putting all other considerations aside.
My path has led me to a deathbed decision and it needs to be made. I am very relieved that I have avoided a catastrophic event, and surprise of all surprises, I am ready to weigh in on one of the biggest choices of my life. I wouldn’t have thought either of those things would happen six months ago, but as I said in my last blog, ‘Time changes everything.’
So, what’s it going to be?
Whatever is best for Hadley and MammyGrams.
Assisted ‘dying’ facility: *** I would have to tell Hadley my death was imminent and that I’d chosen to spend my last days in a ‘special place.’ *** I could tell her she could come and visit — if she wanted to — but that might create a struggle between her wanting to be with me and a fear of the unknown? *** OR I could lie and say that she can’t come and that we should say our goodbyes.
How the fuck am I supposed to do that?
Okay. Some truth telling. I had to go fall apart a bit.
I’m back on track. *** Should Hadley even be brought to a mortar and brick place of death and dying? *** Do I even want her to see me in an unfamiliar setting? *** Is it fair to put any of this shit onto the shoulders of a seven-year-old?
Or onto the shoulders of this cancer-filled sixty-four-year-old?
Nope.
Home: *** The delivery of ‘death equipment’ to 183 would kick start The Conversation. *** Our discussion would follow the progression of talks we have already begun. *** Staying put would make it easier for her to visit and say goodbye incrementally. *** But she would have to make visitation decisions, and she might feel guilty if she didn’t want to — or just couldn’t see me. *** But she could visit me when other family members did — that would connect her to the process and to her support group. *** But, would my dying at 183 make it an uncomfortable place for her visit once I’m gone?
It’s pretty uncomfortable for me right now.
Just answer the question, please.
Where do you want me to be when I die?
Tim = at home.
Hannah = at home.
Jessica = wherever you are most comfortable.
My younger girl would never impose her thoughts, wants, or wishes on anyone about anything. So, when she says she wants me to be comfortable, that is her only consideration. Although she readily assured that she would do anything and everything required of her — as did her father and sister.
Decision made.
I will die in my home — in the company of people who own my heart.
So, what’s next? You know there’s always something.
THIS!
When I began writing this blog, my goal was to see May 8th — Mother’s Day. In my most recent blog I said I would meet that goal and live beyond that goal. I absolutely believe I will. So, it’s time to select a new date — and I have one — an exciting one in mind.
There is a niche online magazine that is ‘the place’ to go if you are interested in the world of Indie publishing or if you want to know about Indie books. I became an advertiser with the media group a year or so ago after having spent many hours reading interesting interviews with authors, and publishers, as well as fun stories in each issue.
With a click of my mouse, and the flip of an online page, I’ve taken a tour of independent bookstores on the east and west coasts, and learned a lot of dos and don’ts when it comes to road trips from Ben and Roxy, and found exciting book suggestions on nearly every page. For me, many of those suggestions became purchases.
I became a fan of the magazine and decided to enter the Shelf Unbound Best Indie Book Competition in 2021 — my first ever book contest — from which I received Notable Indie awards for Her Scream and Stay Safe.
How wonderful!
When I learned my writing days were coming to an end, and my ‘brand’ would continue under the steady hand of Nancy Pendleton, I wrote an email to the editor of Shelf, briefly explaining the situation. I gave her contact information for my Indie publisher, and booked some advertising space for future editions. She wrote a lovely email in return asking that I keep her informed, I said I would, then I directed her to my blog.
A. Few. Months. Later. This. Happened.
Email from Editor: I’d love to get one of my writers set up to do a feature piece to help tell your story. Any chance you would be up for an interview? It could be by phone, email, whatever you are comfortable with.
Email from Sheryll: I would be happy to do an interview for Shelf. I'd prefer the questions by email, but am happy to speak with someone afterwards if more detail is needed.
On April 4th, Hannah’s birthday, I signed off on the interview. I am very happy that a portion was about my writing experience, but I am beyond pleased that I was able to talk about my journey with hospice. I didn’t say this in the interview, but I sometimes think I was meant to show a personal side to this program. I think my need to write and the time I’ve been given to do that, was part of a plan — a higher one? — maybe not — but it sure as hell became a very important part of my plan.
So, dear family and friends. On June 8th, I hope you will head to Shelf Unbound and take a look at an interview with Yours Truly, then spend a few minutes flipping the pages — you might just find the perfect book to read this summer.
Who knows? It might even be an SOB book!