The Long Edge of Death
David R. Weiss – August 19, 2022
Liminal means “on the edge of” as a threshold: an edge between. That’s where Mom is right now.
When I learned on Tuesday that she would be entering hospice, I was a bit caught off guard. Dementia has been slowly but surely erasing her Self over the past decade or so—especially over the past three or four years. But she was still regularly “with us.” If only for a handful of hours each day, she would nibble a meal, relish her sweet treats, work away at her booklet of simple word games, play solitaire, wander the house, and ask repeatedly for car rides.
No longer her full Self, but still engaged with life albeit in a diminished capacity. Still mostly well aware of Dad. And still showing glimmers of recognition of each of us kids.
That began to shift, barely perceptible at the time, in early August. Her health has ebbed and flowed over the years, and I think we initially assumed this was just another ebb … to be followed by a flow, or at least a plateau. Two weeks later we can see that this ebb was the beginning of her final ebb.
For the past year or so Mom has lived for rides. Sometimes four or five per day. She rarely paid much attention to the sights, and recognized little that was familiar anymore, but something about being in the car soothed her. So Dad kept driving her, even when it drove him to distraction. On August 10, Mom got up late in the afternoon. She had a bite to eat and was ready for her ride. They drove and drove that day. When Dad pulled into the driveway, Mom asked longingly, “Can’t we go just a little bit further?”
There was a pleading insistence in her voice, so Dad pulled back out and they drove on—pretty much into the sunset. Dad figures it was a 50-mile ride altogether. Maybe that pleading insistence was Mom sensing something was different.
The next day, Thursday, was Deb’s 54th birthday. But when she came over with a little birthday cake to share, Dad couldn’t entice Mom to come join them in the kitchen for cake. Mom was not one to pass up a chance for something sweet. But this night she stayed in the living room. Deb said afterwards Mom was “very quiet”—as though her stillness filled the whole room, an aura declaring “This is my silence now.”
Over the weekend Mom stopped eating altogether. As though her appetite for food—and her appetite for life—had vanished in sync. She barely got out of bed—and if she did, it was only to flop on the sofa or slump into her rocker and resume dozing. Dad noticed she needed some real help navigating the house—a first. She was increasingly lost, not just in her mind, but in her home and on her feet.
Sunday night she expressed interest in a car ride but needed significant assistance from Dad to get out to and into the car. After a lifetime of car rides, this was probably her last. Who knew?
Monday Dad was ready to call the doctor to have Mom checked, but when he heard Deon was coming up on Tuesday, he decided to wait until she was here, too. He thought he might need both Deon and Deb to help him. He did.
Dad and Deb managed to get Mom up and dressed, and then they led her down to the living room. Disheveled is compassionate. “Pretty rough” was Deb’s text to me. Somewhere between child and crone, between stumble and stupor. Deon and Deb guided her outside and into the car, which Dad had waiting with the door open. At the clinic Deb went in and brought out a wheelchair, which she and Deon moved Mom into and took her inside while Dad parked the car.
Mom has been sedentary for years, but she’s never struggled with mobility. My guess is that getting ready to die has been more exhausting than we could imagine.
After a brief examination, the doctor’s recommendation was clear: it’s time for hospice. When I heard she was going to the doctor on Tuesday I was still counting on more flow to follow this latest ebb. But as I spoke on the phone afterwards, first with one sister, then the other—and with hospice now waiting in the wings—the finality of this ebb began to settle in. They each encouraged me to make plans to come “now”; not to wait until after hospice did the initial in-person at-home evaluation the next day.
The urgency was twofold. First, if I wished to be with Mom before her wits entirely left her, to be able to say “goodbye” and “I love you” and have it mean something to both of us—well, my sisters were clear: that window was closing. And fast. Second, it seemed important—infinitely so—that we step across this threshold together. That Mom’s husband and three children (our older brother died in 2004) be here together lest the absence of any one of us prove too much for the rest of us.
I packed that night and left the following morning. Hospice arrived hours before I did, so I missed the first consultations with the social worker and the nurse. But when I did arrive Wednesday evening, I went straight to the bedroom to let Mom know I was here. She was not nearly as impressed by my arrival as I was. She was impressed (or distressed?) enough to comment on my long hair. When I asked how she was, she replied, “Oh, I don’t know anymore.” It was less frustration than honesty speaking. Now 7:30 in the evening, she had not gotten out of bed at all yet. She looked like she was practicing her casket pose, though her eyes fluttered now in a way I doubt they will then. She was clearly no longer invested in this life. On the edge of dying, but not agitated or restless. Just weary. Bone weary. All day long.
Wednesday night around nine she made her way to the living room sofa, crawled onto it and lay down as if to go back to sleep right there. I went and sat by her for a while, joining her silence. She thanked me for “just coming to hold my hand,” and two minutes later she released my hand and said, “You may depart.” And so I did. Perhaps it gets crowded at that edge.
Thursday when the nurse came for a follow-up consultation, I asked how quickly this would progress. Mom was more at the edge of death than I’d ever seen anyone. She’s literally spending 23-plus hours either asleep or not-asleep-but-not-awake-either. Her wakefulness comes in 5-minutes gasps across the latter part of the day, and it seem to take all her remaining energy to muster for that brief time. At the edge of death.
The nurse demurred. No signs of “active dying” yet. Mom is still in a long slow coast toward death, but it could easily be seven, ten, twelve days before that final end even begins. That final stage of active dying—the body slowly shutting down one system after another—will likely last 24-48 hours.
Who knew there was such a long edge to death? (Maybe you did. I did not.) I pretty much expected to come home, settle in, and keep Mom company for 3-4 days while she died. Turns out she has other business to attend to. I can’t say what that is. And she’s not telling. It looks like she sleeps pretty much all day. But the nurse says she’s not dying just yet. She’s just mostly stopped living.
You could say she’s liminal. An embodied edge between. Apparently, it’s a wider threshold than I realized.
I’ll have a couple days of deep presence to her (and to Dad and my sisters). Then I head back to Saint Paul to await the finals summons. Mom’s life is liminal. Mine is still busy. So, I’ll head back and be busy for another week or so. But before I leave, I’ll say my final farewells and my last “I love you”s. These will be the last words I speak that (if I’m lucky) Mom will acknowledge.
When I return, during those final hours, she may well still be hearing all that’s said. But she’ll be listening from a place deep inside. Then truly on an edge beyond our reach. LIMINAL in all caps. In the meantime, she’ll be outwardly disengaged while she inwardly ties up loose ends, her psyche slowly releasing itself from a lifetime of joy and sorrow, love and loss, family and faith. Most of that is all jostled up by dementia now. She may need this long slow coast to chase down all the farewells she has to make. What can I do except wish her godspeed as she travels this last long edge of death?
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David Weiss is a theologian, writer, poet and hymnist, doing “public theology” around climate crisis, sexuality, justice, diversity, and peace. Reach him at firstname.lastname@example.org. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in writing Community SupportedTheology at www.patreon.com/fullfrontalfaith.