April 04, 2011
When we got there on Friday, it was March 25th, and he was reading the Kindle I’d gotten him for Christmas. He was in a hospital bed in the living room and looked thin and pale and waxy, but he was reading his Kindle. He told me I looked good, referring to my super-pronounced-looking pregnant belly, and I think I said something dumb, like "you too!" that I immediately regretted.
But honestly, compared to how he'd look in just a matter of hours, it was true.
Noah walked in and surveyed the room. “PopPop, you sure are sick, aren’t you,” he observed matter-of-factly.
Ezra, thankfully, did not parrot my pre-visit explanations, but merely stuck his finger in his mouth and requested PopPop make his trademark popping sound with his finger and cheek. He obliged, laughing. Ezra giggled, as delighted with the trick as I’d been as a kid.
We hugged, we talked, we gossiped. He teased me about my hair, which he has not particularly liked since I dyed it red. “It’s looking better!” he said earnestly, referring to the neglected, washed-out, two-inches-of-dingy-blond-roots state it’s currently in.
Jason and the boys left to stay at his parents’ house; I stayed behind to keep my mom company. She slept on a recliner in the living room. I went upstairs to sleep in their room, where I was randomly unnerved by the sight of my dad's verse-a-day calendar, still stuck on the Friday from the week before -- the day he agreed to stop, to in-home hospice, the last time he'd been upstairs in his own house.
By the time I woke up on Saturday, it had already begun.
Death is ultimately cold, but his started out hot. A fever. Sleeping more and more. Confusion. Disorientation. He was saying things that didn’t make sense, reaching for medications he’d already taken minutes before. We thought, at first, that he'd simply taken an extra Benadryl. Yes, that was what was happening. That explained it. Move the medications away from his bedside, problem solved, here's your Kindle.
His nurse visited and floated the idea of moving him to their full-time hospice facility. He said no.
He asked for a drink but spilled juice all over the place. We blamed the cup. Probably better off with a lid and a straw anyway, right? That's the problem, surely. I went to the store to find some kind of grown-up sippy cup, eventually stumbling upon some plastic sports cups with obnoxious, cheesy sayings on them.
This was the first one I picked up off the shelf:
That bit of gallows humor was too much for even me, so I dug around until I found one with an ugly but inoffensive fishing pier design on it instead.
He never really woke up enough to use it.
I went over to my in-laws to spend some time with the boys. I packed up dinner for my mom and I (Julia Child’s beef bourguignon, courtesy of Jason), but was interrupted by a text message. Come, hurry, something’s wrong, bad, nurse is here again, etc.
I jumped in the car and floored it, called my mom to tell her I was on my way and she asked if I could stop somewhere and buy some liquid Tylenol for my dad’s fever -- he wasn’t awake enough for a pill and his fever was scary high.
“I PACKED THAT. HANG ON,” I shrieked and made a u-turn back to my in-laws and our luggage, where I dug out some generic children’s acetaminophen from the stash of medicines we drag everywhere now and promptly dashed out again.
The nurse tried. He gagged and choked after barely an Ezra-sized dose of a teaspoon. He was on fire, the hottest fever I’ve ever felt from human skin.
She mentioned the hospice pavilion again, gently hinting that it was simply not going to be possible for my mom and I -- neither of us with any nursing backgrounds, nor clearly especially level-headed in the face of a medical crisis -- to keep him comfortable and pain-free at home from this point on. He was so out of it, she said, it was unlikely he’d ever really even figure out that he’d been moved at all.
My mom worried about money because their insurance would only cover a five-day stay. The nurse assured her that arrangements could be made, that no one was ever turned away from their facility for an inability to pay, etc.
But I could tell she knew already. It wouldn’t be more than five days.
I hid in a coat closet and called my sister, crying because we didn’t want to go against his wishes, but oh. Oh. Oh. We can’t do this. I can’t do this. Mom can’t do this. It’s happening so fast.
Finally, I rationalized that Dad’s wishes to “die at home” were more about not being alone and having us there than the actual physical spot on the map. Hospice meant my mom could stay by his side as his wife and not his caretaker or nurse, for the first time in years. Other people could handle the ugly, more indelicate parts of the dying process. He would understand, if we could fully explain it to him. Which of course, we couldn't.
“Okay,” I said.
“Okay,” my mom said.
Everybody got on the phone except for me. I sat next to him and held his burning-hot hand. I pressed his thumb into some molding compound so I could get a necklace made with the print, but his skin seemed melt right through without leaving much of an impression.
Jason rushed over so we could follow behind the ambulance to hospice. I remembered to put the stew in the refrigerator but would later realize I left two entire containers of milk on the counter.
The hospice facility had TVs, a library, DVDs, CDs, a kitchen stocked to the gills with drinks and snacks and comfort foods for families. I saw a small playground outside. I drank some coffee and ate a chocolate pudding cup. Jason asked my mom if he could buy her dinner and she wanted fast-food hamburgers and French fries. He went to Wendy’s and brought us both back exactly that, plus Frostys.
It was exceedingly quiet. Carpet instead of tile, couches and recliners instead of vinyl waiting-room chairs. No machines save for oxygen, no drapes or beeps or boops or needles or vital sign checks. The nurses didn’t wear scrubs. They all looked like people I’d be friends with in real life, and I loved them immediately. They also did not administer any more Tylenol, explaining that the usual ways of administering it to an unconscious patient were too risky for my father and would only cause more bleeding. They turned up the air conditioning, took off his socks and put ice packs under his arms instead, which eventually brought the fever down enough for my dad’s eyes to open and for him to nod a bit when offered pain medication, which was rubbed directly onto his gums.
“Does he know where he is?” my sister worried and texted from afar.
“I really don’t think so,” I responded, at a loss to adequately explain the waking-sleep state he was in.
I made another run back to the house around 11 pm to get my mom her toothbrush and a change of clothes. When I returned the nurses had set up a bed for her on a cushy recliner, but told her she could climb in bed next to him if she wanted. “We’ll be here if you need us. But not if you don’t.”
I went back with Jason to his parents’ house and slept like shit. My mom texted in the morning that Dad was asking for me, which seemed beyond belief, and frankly, honestly, exhausting. Was last night a fluke? Did we overreact? Move him too soon?
Was this rollercoaster never, ever going to end?
And was I actually admitting that I kind of hoped it would?
I arrived and he was awake. He couldn’t talk, but was mouthing a few words and trying anyway. He recognized my face and voice. I called him Daddy and told him I loved him, and he struggled to say it back so I said it for him. I know. I knew. I always knew. He squeezed his eyes shut and nodded. I promised we’d take care of my mom and Jason would take care of me and we’d all take care of the babies and everything was fine. Everything was fine.
He clutched my hands. He rubbed my arms. He touched my face. It was the most desperately perfect moment ever.
His eyes weren't open much longer after that. His legs twitched and his arms pulled at blankets and clothes and his oxygen cannula, which he’s worn for three full years now. He was breathing through his mouth -- a noisy, harrowing-sounding breath, full of blood and secretions -- and the nurse said we could probably go ahead and turn the oxygen off if he kept pulling at it, because he wasn’t getting anything anyway.
We pulled it off. There was no difference. I reached over and hit the power on the machine, plunging the room into silence, except for the sound of that terrible, death-rattle breathing.
My sister called in the afternoon and I held the phone next to his ear. At the sound of her voice, his face twitched into an unmistakable smile of joy. For just a second, then back to peace.
We had to leave. We HAD to. I’d gone through every possibility I could think of, but the fact was we had the final day of Noah’s evaluation on Tuesday morning and rescheduling meant we went back on a months-long waiting list for another open spot. His IEP meeting was in a week and we wanted the results. We couldn’t miss it. Jason couldn’t get many more days off, I didn’t have childcare for the afternoons, it would take time to make arrangements for later in the week. A hospice nurse whispered that she could babysit the next day, on her day off, but the boys were clearly struggling with the situation and the lack of routine and I flapped my hands around helplessly until my mom grabbed my shoulders and told me to go home, it’s okay, she understood, and hell, he’d understand. Go take care of your babies.
I asked for a few minutes alone to say goodbye. I repeated everything I’d already said that morning. I kissed his head and shrunken cheek and tried to ignore his open mouth, which was seeping with blood from his gums, tongue and cheeks. It was hard to see, but hard not to as well.
This time, he didn’t respond. His body was still holding on to a vital function or two, but honestly, he was already gone.
I left the room and immediately started sobbing like never before, as the not-exactly-earth-shattering realization that I wasn’t going to see him ever again hit me with the force of rush-hour traffic, oh my God, oh my God, it's not fair, it's not fair.
We got home in under three hours. I didn’t unpack. I took a bath and went straight to bed.
The phone rang at 3:10 am. It was March 28th. And it was over.
I cried for awhile. And then I didn't. And then I did, again.
Then I added a dark-colored maternity dress to my still-packed suitcase and bought a train ticket to go back up to my mom's house, again.