Life Support
The call was finally made yesterday. Bill agreed to put in the order, officially, to have Mom taken off life support. According to Christopher, we "will be updated on when she passes," so I guess that's just what we are all waiting for now.
She isn't even dead yet, but Christopher messaged me on Facebook Messenger with this information yesterday right around 4:30, the moment at which I finished my work day, and my immediate reaction to seeing his text was odd and unique. I texted this back to him:
I had no idea how I was going to react to this. It felt like something in my chest just dropped.
What Christopher wrote me back was sad in its own way: Unfortunately I have no idea how to react because I feel I need to be here for Bill. So I haven't even cried or had any major emotions as of yet.
I haven't either, really. I did have waves of emotion several times over the course of the rest of the afternoon and evening last night, and my eyes filled with tears a couple of times, but I never outright cried, let alone wept. I keep waiting for something like that to come, and honestly I have no idea if it ever will. Maybe it will. Who knows? All I know is I've had a fair amount of emotional remove regarding my mom for many years as it is, and I have in one way or another been letting her go pretty much since her first stroke in 2014. Still, even right now, it makes a difference knowing she is alive, even though it's already clear she's never coming back.
Just so I have it all in one place, I'm going to write up a timeline overview of how Mom got to this point this last time.
Thursday, June 18: Mom wakes up with slurred speech. Mary, her caretaker, decides to take her to the ER. She says goodbye to Christopher as she leaves, as casually as ever, neither of them having any idea it's the last time they'll say anything to each other. From the ER, Mom is transferred to the ICU at Kootenai Health in Coeur d'Alene, Idaho, due to fluid in her lungs and her oxygen levels and blood pressure being too low. By that evening, the only messaging from the hospital is that they are monitoring her for a while just to make sure she's okay.
Friday, June 19: The next morning, Mom has a significant stroke.
Saturday, June 20: I finally start making my own direct phone calls to the hospital, allowing Christopher to deal with Bill's emotional meltdown and for me to get information first hand which I can distill for sharing on Facebook. It takes a couple of phone calls with the hospital for the serious of this to truly sink in: Dr. Murphy, the ICU doctor in attendance, tells me more than once "She won't come out of this without significant disability," and I only realize in retrospect that she was likely speaking euphemistically. She is given a treatment at 10:00 a.m., which they had to get Bill's permission for since it came with a 4-6% chance of hemorrhaging, and unfortunately that's what happened: treatment for a blood clot caused brain bleeding for which there was no surgical option. By 4 p.m. she is paralyzed on the left side and has stopped speaking. I actually ask the neurology doctor I was able to speak to later what he thought her chances were, and he has curious phrasing: "Forty percent chance of a good outcome." I don't think to ask, "How do you define 'good outcome'? Just, not dead?" Dr. Murphy is cautiously optimistic, saying she "expected the worst" and Mom looked "better than expected."
Sunday, June 21: Doctor reports that in at least one instance, Mom responded to a command: she wiggled her toes. That seemed slightly hopeful for a moment, except she has not responded to any such commands since, and it's over a week later. Several cat scans have been done. As of this day, though, her blood pressure is stable, and I am informed she has an irregular heartbeat which was the likely cause of her stroke. I'm told it's still "too early to prognosticate," she needs a little more time, and she is making tiny gains each day. This is also the day Mom gets her first visitor, my niece Nikki—Christopher's eldest—who drives over from Spokane. Nikki tells me on the phone two days later how horrible the experience of seeing her was, and I feel validated in my decision not to go see her myself, given that she's not conscious anyway.
Monday, June 22: Although I had been told due to COVID-19 restrictions the hospital was limiting patient visits to one person a day, to my surprise they allow Bill and Christopher to visit together. Christopher tells me on the phone later that they showed them the CT scans, and the affected part of the brain covered about a quarter of it. I choose not to state this on social media, but this is the day I make the decision in my own head, and I say to Christopher on the phone, after having my own conversation with a doctor that morning, which doesn't feel as hopeful anymore: "I think it's time to let her go." Christopher says, "Yeah," and we are on the same page regarding this from this point to the end.
Tuesday, June 23: Becca and Tyler drive all the way over from Lake Stevens, and Becca gets her own solo visit with Mom. Because when I called the hospital and was told family was visiting her and I figured out it was Becca, I just assumed Christopher was with them, so I say okay when the nurse suggests she have them call me when they are done. Turns out Christopher was not with them, but Becca still calls right after her visit, very upset, and saying, "I hated seeing her like that." When I say, "I'm not sure I even want to see her like that," Becca replies, "Trust me, you don't." This is the day I even say in my Facebook update about it that I think it's time to let her go. I have phone conversations with Nikki and Christopher on this same day, all while Shobhit is driving us back home from Long Beach, and all of us are on the same page with this. Except for Bill, who as the husband has to make the call.
Wednesday, June 24: First day since Saturday that I do not speak directly with the hospital. Shobhit and I both settle onto the idea that there's nothing new to learn. Christopher works on getting Bill to come around to what we already knew Mom would want: to take Mom off the ventilator, including their second joint visit with Mom on this day. I do get messages from their close friend and former PSR worker Shelley, that she spoke with Bill and that she thinks he might he suicidal—to such a degree that she calls her old PSR agency and they tell her they will send someone out to check on him. No more than an hour later, Mom's old school friend Karen messages me that Bill called her that morning to ask her opinion on what he should do (she is on the same page regarding letting Mom go), and when I mention Shelley's concerns about Bill being suicidal she also said "that's crossed my mind a couple times."
Thursday, June 25: I get Facebook messages from Cyndi, Mom's biological sister who lives in northern Michigan, telling me Bill had also called her. Even she says, "He’s really beside himself, talking about killing himself and everything." I message Christopher later in the evening to find out if someone from the PSR agency came by, and he just responds, "Yeah, he's doing okay," but I have my doubts. First, I don't know how well qualified Christopher is to assess (granted, he's there and I am not); and second; having three different people mention concerns about this strikes me as a little alarming.
Saturday, June 27: As she promised she would a week before, Shelley travels from her home on Whidbey Island to Wallace, Idaho. She does not go see Bill on this day, though. Bill did tell her he would "keep Jeanni around" until she visited this weekend, which Shelley pointed out was not something Mom would want, but here we are. I am still immensely grateful that Shelley went to visit, as I know that Bill trust her more than most and will listen to her.
Sunday, June 28: With Shelley finally visiting the house, Bill finally comes to the decision to take Mom off life support. She calls me to tell me, and after starting to suggest Christopher do this, I stop and finally offer to call the hospital myself to ask what Shelley wants to know: what are the protocols, how do we get this done? I call the hospital and am told that Bill does not have to be there if he doesn't want to, which surprises me; I assumed he'd have to sign a form or something—but, I guess they can just have a phone conversation. (It occurs to me now, I wonder if any of these regulations are just suspended due to the pandemic.) Shelley seems relieved to hear that when I call her back. But, the hospital also says they have to get Palliative Care involved on this call and they can't be called that day, it has to wait until Monday. When I later tell Shobhit about this, he immediately says this will just give Bill time to have second thoughts, and he's totally right.
Monday, June 29: I call Christopher around 2:30 to find out of they got the call from the hospital that was supposed to happen at 10:00 in the morning. Christopher says they did, but Bill is trying to change his mind again: "I'm trying to get it done," Christopher says, and Shelley is on her way back over to their house again, presumably to convince Bill once again to do the right thing. It must have worked, because it's only a couple of hours later that Christopher messages me that Bill gave the permission and "the order will be put in" to take Mom off life support.
So now, we wait.
[posted 12:37 pm]