I’m writing about not writing because when you can’t write, you just start. And then more follows.
I’m writing about the end.
So many times I’ve started posts in writing or in my head, but my own nature has disallowed me from finishing or publishing because of a sense of incompleteness. I want things to be tidy. A timeline. I don’t want to talk about something that happened at the funeral and then something that happened in the hospital. But I realize, now more than ever, that things things should... must come out, and it’s not necessary that I tidy them up for you or me.
We went to the hospital, to be admitted to hospice care.
I’d like to say that it was a measured decision: he’ll die soon, and so we need to have round-the-clock care when that happens, to make him comfortable and do what needs to be done. It wasn’t that. I had reached my limit with observing and diagnosing and handling Ian’s decline on my own. In a very short time Ian had gone from eating and saying confused words for me to interpret into meaning to lying askew, constantly listing, eyebrows not raising and lowering with thoughts or understanding, no natural inclination to opening his mouth to spoons of applesauce, and generally not taking in the things going on around him.
He started to make the breathing/choking noise, which in its very early stage was hard to distinguish between “he needs to cough” with what I have of course come to know was the oft-used term “death rattle.” I wanted him to cough. I wanted him to help me help him sit up. I wanted him to focus his one good eye at me as I talked or attended to him ... but these things ceased to be.
So in desperation and exasperation, I called the hospice team. They sent an ambulance immediately.
It didn’t feel like “this is our last trip.” I didn’t have any “finality” thoughts ... just ... here we go, into the ambulance. I didn’t think anyone was going to fix him, or that we were going to somehow return to the house in a more stable condition... I didn’t have those thoughts. Just: This is next. This is what we need to do. And so we did.
The women at the unit were lovely and gracious and sweet. While they situated him in his room, they took me away to do intake paperwork and interview. I remember resenting the time it was taking them to hook him up to things and WHAT WERE THEY DOING IN THERE AND WHY CAN’T I GO IN? and I HAVE ANSWERED THESE QUESTIONS SO MANY TIMES but I sat with a nurse and went over his history, his medications, his current condition. I remember pleading with her - “it’s been so long since he’s had a drink of water. I know that it’s not necessary at this point ... I just feel like if you could maybe give him some fluids?” and she explained to me that it would actually do more harm than good to do so. I knew that. But I also didn’t.
When I finally entered his room, my dad had beat me to it. He sat, always stoic, in a wooden-armed hospital chair, gazing at the man he’d come to love as a son. I was immediately grateful that the nurses had obviously cleaned him throroughly, changed him from a hospital gown into a respectable man-shirt*.
He was awake. Truthfully a bit more aware than he had been when we left the house. Slightly elevated and surrounded by sheets and an actual blanket. I sat down beside his bed and held his hand.
“I love you.”
“I love you, too.”
“I hate your school.” **
“I know.”
His eyes closed at some point, and dad and I talked quietly about I have no idea what. The nurse returned to say that there was a suite we could move to so we would all have comfortable places to sit. We changed rooms, and I called his mother.
“We’ve moved Ian to the hospice unit at the hospital. I don’t know that he has hours or days, and you don’t need to rush here, but that’s where we are.”
She was, at that moment, at the hospital with her father, who had just suffered a massive stroke. I told her to be with her mom and dad and that it was okay ... she declined and said of course that she’d be right there.
At the suite, there was a couch-bed, a table and chairs, a telephone, a television maybe? lamps, an easy chair ... such a far cry from the hospital rooms and waiting areas that it was like entering someone’s home. I lie down on the couch, scoping out my spot for tonight; I would curl up here and try to rest.
Carol and her husband arrived. She sat as his bedside and talked to him ... I honestly don’t know if he was talking at that point; it was a separate room with a door. I felt like that time was private to them and grasped at some kind of “settling in” feeling. I looked at at the recliner: my dad has slept in a recliner for years at home, as it provides the most support for him and he has trouble in a regular bed. Carol and Dale had decided to stay the night, and so I looked at my dad, who had spent COUNTLESS nights asleep in an ICU chair (barely more than a folding one), and told him to go ahead home. Dale could sleep in the recliner, and I would camp out here on the couch. Carol had the nurses bring her a mattress for the floor beside Ian’s bed; she, too, was exhausted, and didn’t want to leave Ian’s side. She fell fast asleep.
I think there were phone calls and texts in there - letting everyone know where we were and what was going on. There had to have been, but I don’t really remember them.
Lying there on the couch, I could hear Carol’s snore, Dale’s snore, and Ian’s non-snore snore. It was a loud, awful drowning noise, but it was rythmic. I drifted to sleep.
At some hour, a nurse came in and said, “he’s had a decline. we thought you would want to know.”
I went into his room - the lights were very low. They explained something about oxygen levels or breathing or some kind of indicator that things were progressing. I asked that they move him over and I crawled into bed, under the blankets, curled up beside him for the first time in months. His body didn’t shift and accommodate; it was an odd feeling, knowing no matter how much I squirmed around, he wouldn’t do the half-awake adjusting one does when curled up in bed. His breath-noise continued. I put my hand on his chest. I talked to him ... I told him I was there and that it was okay and we were all going to be okay and that I loved him. I sang him our wedding song, over and over. I stroked his cheek. I fell asleep, I guess, off and on, becoming startled at a louder exhale and noise. I put my hand over his mouth, in a dazed effort to calm him — to make him stop making that horrible sound, I’m sure, but also ... it felt like it was such a struggle for him. I wanted him to stop struggling.
I woke up to quiet. I sat up a bit and looked at his face. I could still see him breathing and felt his heart and warm skin. It was around 5am. I sat up and looked at my phone - lots of messages from lots of people. Love and love.
I turned and watched him... and soon I just knew. I put my hand to his mouth, I tried to feel his heart, I strained my eyes to look and look and see and sense and feel ... I laid back down and sang again. I stroked his cheek again, and did I imagine it felt cool? DId his lips look a different color? The sun was breaking and the morning color ... I’m not often aware of sunrise light. I texted my parents: “He’s gone.”
I pushed the button for the nurse to come. She softly entered, held his wrist, looked at him, and told me that he had passed away. Just as she was doing so, his mom stirred and stood.
“He’s passed away.” She burst into tears. “Oh, no.” she said. What else is there to say? It doesn’t matter that it’s not something to be denied. You’re not in denial. It’s just NO.
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I didn’t often lie with Ian in hospital beds. Sometimes he was in dire straights, and there were too many wires and not enough space. Sometimes he was at home and resting comfortably and I didn’t want to disturb him. Or we had visitors. Or I knew I wouldn’t be able to get sleep I desperately needed. Or something else needed my attention. In the months preceding his death, I had begun to separate myself from my best friend, lover, husband and companion, and had become his nurse. It was an awkward friendship; I’d do absolutely anything for him, and yet I pulled back affection. His love language was touch, but the most he received from me was physical care and medicine administration. Why didn’t I just crawl into his home hospital bed? Because I just couldn’t.
And that makes me sad.
*a wonderful thing that hospice does for patients is to cloth them as normally as possible. They take garments and cut the backs out, using Velcro closure, so the patient can lie in a comfortable nightgown or polo shirt. This is a beautiful thing.
** an unfortunate part of our shared cultural vocabulary was the entire contents of an ill-conceived Adam Sandler comedy album, committed to our adolescent memories. In one of the less raunchy routines, Sandler imitates a cheerleader frustrated with a pep-rally audience who refuses to participate. In a final sobbing tantrum she yells, “I HATE MY SCHOOL!”. It’s a phrase we used frequently to express discontent at far less serious situations. It became the last phrase I uttered to Ian with his eyes open. I do not regret this, as it is amusing, but it IS a little awkward to explain 😃
