I don’t want to think about the end, but I’m about to. I’d prefer to think about Stephanie’s life, all the wonderful times we had so very far from doctors and hospitals, but the memories of her last hospitalization keep cluttering my head. It was a horror show, and to get past it I reckon I need to talk about it. Write about it. Ghastly things need to be said out loud, before I can slip further back to better memories, to all the many, many years that were so much better than the last week of her life.
So here’s a disclaimer: This entry is not going to be pleasant at all. The details might qualify as gruesome. You have been warned.
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When I see it (and I’m in no hurry), the death certificate will say that Steph passed away in the early hours on Saturday, September 1, 2018. I was there, holding her hand.
The cliche is that she went peacefully, but she really didn’t. It was a chaotic scene in the intensive care unit, with a flock of doctors and nurses shouting orders and taking turns performing cardiopulmonary resuscitation. Honestly, though, by that time I think Stephanie had been gone for several days. To my recollection, her last moment as Stephanie was on Tuesday evening, 8/28/18.
She was largely lucid on Friday 8/24, and even more so on Saturday 8/25. We spoke for ten or twenty minutes at a time, and then she’d sleep for ten or twenty minutes. When she woke, she was mostly herself but she wouldn’t remember where she was, and progressively through the day on Saturday she began remembering more, and even remembering that she was in the hospital when she woke up. Many doctors came into her room and had many conversations, mostly with me but more and more with Stephanie too. By Saturday evening 8/25, Stephanie and I agreed that she would be talking with the doctors from then on, instead of me. That’s how good she was doing.
Color me naive, but we weren’t seriously considering that she might not make it. Of course, we knew she had health issues, and several scary diagnoses. We knew that her life would be shortened by her kidney disease and/or the ever-present complications. But when Stephanie was hospitalized for the 12th or 15th time, it never seriously crossed my mind that she might exit the building via the morgue.
Each hospital stay had been incredibly difficult, but she was always discharged and left the hospital. Sometimes there was physical therapy for weeks or months afterwards, sometimes there were nurse visits to our apartment, and always there were follow-up trips to see the hospital’s assorted specialists. There had even been hospitalizations where Steph wandered in and out of lucidity, not much different from those first few days during this hospitalization. Never was it easy, but always she’d come home.
I was extremely worried, of course — nobody does hospitals without being worried. Stephanie was awake, though, and she was talking, she was frequently and increasingly lucid, and worst case scenarios seemed far, far away. I always kept detailed notes during her hospitalizations, and a lot of my notes during her final stay at the hospital had headings like “After discharge” and “Long-term recuperation.”
But on Sunday morning 8/26, Stephanie didn’t really wake up when she woke up. All day, again, she faded in and out of sleep and in and out of lucidity, but she was “there” a lot less than she’d been there on Saturday. The difference was stark enough that her nurse urged a doctor to order a follow-up MRI of her brain, but it looked fundamentally the same. Perhaps she was just needed more rest, we thought.
She had fewer still moments of lucidity on Monday 8/27 and Tuesday 8/28, and I was there with my laptop methodically Googling at every possible diagnosis that any MD or RN suggested. I found some sources that suggested music could help bring someone back to lucidity, especially familiar music. I ran that idea past a nurse who agreed that it was a good idea, so I drove home and got a CD player and her favorite album, the rock’n’roll soundtrack from the movie Crooklyn, and started playing it in her room.
She responded almost immediately, with a few twitches to the rhythm. By the second song — “Respect Yourself” by the Staple Singers — she was kicking her leg in the bed, matching the beat. She was looking at me, a smile on her lips and in her eyes. “I love you, Steph,” I said, and she kept smiling and basically dancing, but didn’t say anything.
“She’s rockin’ in the bed,” I said to the nurse, and he said, “Yeah, she’s rockin’.” And she was. I don’t remember whether I started moving my head side-to-side to match her head movements, or whether she started moving her head to match my movements, but my lady was rockin’ in her hospital bed, smiling at me, and we were making genuine eye contact, both of us bopping our heads to the tune. We were having a moment, and it was good. It lasted for a few minutes, the length of the song. She said nothing, but she was happy. I didn’t know that it would be our last contact, but it was.
She fell back asleep after the song, and as I scour my memories over the next few days, there wasn’t another flash of lucidity. When I held her hand after that, it was just me holding her hand; she wasn’t holding my hand in return. Her hand would occasionally contract, but it happened in both of her hands at the same time; the nurse said it was probably just a muscle twitch. Doctors kept coming in and poking her, but her only response was a reflexive response to the pain of a pinch.
I remained optimistic because I can be stubborn as hell, just like my stubborn wife. I told myself, and told Stephanie, that she was coming back, and I believed it. As late as Friday night, I was chatting at her, feeling the squeezes she was giving my hand, and trying so hard to believe that there could be some correlation between those squeezes and whatever I’d said a few moments earlier. But I had to acknowledge, the squeezes came just about as often whether I said “I love you” or whether I said nothing at all. I stayed there, talking with her, holding her hand, scratching her back, telling her stories, kissing her cheeks, and playing Crooklyn on an endless loop. Hoping.
Every time Stephanie has been in the hospital, they’ve let me spend the night in a chair beside her bed. I’ve always been there around the clock, every time. But this time she was in an intensive care unit (ICU), and the rule was that I had to leave the room overnight. So I’d been sleeping in one of the waiting rooms, and always letting them know where I’d be, in case of emergency. And here comes the gruesome part. The worst thing that could happen.
At 2:45 or so in the morning, a nurse woke me in the waiting room, and said, “She’s alive but in a serious situation.” We rushed back to the ICU, and Steph’s room was a nightmarish whirlwind of activity, with 14 people huddled around her bed, one of whom was doing CPR, all the alarms sounding, the heart monitor flatlining, all the other monitors wildly fluctuating. Oxygen 100, then, 35, then 100 again; blood pressure crazy high, then crazy low; a cacophony of beeps and buzzers. Someone brought me a chair, and I watched from outside the room for several minutes.
One staffer seemed to be assigned to stand next to me, maybe to answer questions, maybe in case I fainted. After watching in terror and silence for several minutes, I asked her, “If I spoke to my wife is there any chance she could hear me?”
“We don’t know,” was the answer. But someone told people to step aside, and while enough nurses and doctors stayed close to Steph to continue CPR and continue barking out orders and status as the emergency continued, they let me close enough to take her hand. Someone put a chair behind me, and I sat and blubbered what words I could find through the tears for a few minutes. “I’m here, Stephanie. I’m here, and I love you.” On and on, while the team’s coordinated chaos continued all around me. I don’t think she could hear me, but I had to tell her I loved her, in case maybe she could hear me.
Meanwhile, they kept pounding her chest, hard enough that I knew bones were breaking. I asked our nurse, “How long can this continue before all hope is gone?”
She answered, “That’s up to you. We can go for a long time if that’s what you want.”
Me: “But is there any hope of bringing her back?”
A doctor interrupted: “Physically, yes. But mentally … by now, after so long without a heartbeat, even if we were able to bring her back there would be significant brain damage.”
Stephanie and I had talked about this “What If?” scenario several times, in great and painful detail. I knew what she’d want, without a smidgen of doubt.
I took a deep breath through tears and said to her, “Thank you, my love, for everything, for being the best friend and the best person I have ever known or ever will, and … goodbye.”
They stopped the CPR, but our nurse continued gently explaining what was going on. “I’m going to give her some morphine to ensure that she leaves us without pain.” And later, “You’ll see some respiratory readout and other data on the monitor, some muscle spasms, but it’s all residual.”
I held Stephanie’s hand until it grew cold, talking to her, then stepped out of her room for a breath of air, and returned, several times. The employees gave us the room, with no interruptions, and I’m thankful for that. I spent ten or fifteen minutes alone with her, crying and saying everything I could think to say, some immeasurably small fraction of the “thank you” she deserved. Steph’s eyes were still open, and unlike the movies they wouldn’t close with a little push, so I finally left the room. “I’m leaving, Steph,” I said, “but I will always be with you, and you will always be with me.” I couldn’t stop crying, never wanted to stop crying.
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It’s been almost two weeks now, and the crying has intermittently stopped, but I’m still bawling at least every few hours. The shock is gone, but the grief will be with me forever.
So that’s what happened in the hospital. I’m eager to forget almost all of it, and my hope is that writing it down helps clear out my head a bit. I want to remember the way Stephanie lived; that’s so much more important than the way she died.
But when I do remember Stephanie’s last moments, I hope “Respect Yourself” is what comes to mind, and seeing her dance to the rock’n’roll in a hospital bed. To me, that was Stephanie — leaving this world the way she lived in it, with joy on her face.
More about Stephanie.