black outlines

There are two sides to my father's death. There are the plain, cold facts of what happened, and there are all the little details that fill in those black outlines with color. I need to get them both out of my head.

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My first few weeks in Florida were overwhelming to a point of comedy.

My dad had no one but me to take care of him. His brothers and he had long since ceased speaking. There was a cousin, herself elderly, unstable, and unavailable. That was it, as far as his family of origin. As far as his own family? His ex-wife was dead, and his son was MIA. He had no close friends, and certainly none close by enough to help.

So I was it. And I was in way, way over my head.

I can't claim to have hit the ground running when I got there. More the opposite: I faltered and flailed about for the first few days, terrified and in denial of the situation. Feeling sorrier for myself than him, really. But once it became clear that my father was becoming more helpless by the minute, some survival mechanism in me clicked into gear. I made calls, set appointments, did research, and shuttled him to doctors. I wrote lists, asked questions, picked up supplies and medicines. I created three different schedules for pill-taking, in an effort to make it easier for my father to keep track of the seven prescriptions he was taking (none worked). I cooked and cleaned and counseled my father as best I could. When he started to lose mobility, I rearranged furniture, and even sold some things just to get them out of the way. I acted as liaison between him and the panoply of specialists he'd collected in a few short days since his diagnosis.

And speaking of his diagnosis. Here's that, in a nutshell. On April 7, my 73 year-old father was admitted to the hospital with pneumonia. They didn't like what they saw, so they kept him overnight, and ran tests. A day and a half later, he was informed that he had small cell lung cancer. I was on a plane two days after that. Four days after that, his radiation oncologist gave him a prognosis of 6-12 months. But the doctors were optimistic about treatment, affirming that my dad would be healthy enough to undergo several weeks of chemotherapy and radiation. They even said he should be able to drive himself to his appointments.

Hearing that, I was utterly nonplussed. It seemed obvious to me that he wouldn't be able to care for himself on a basic level (eating, bathing, etc), much less have the strength to take himself to treatments. But maybe they were right? Maybe the bad state he was in was temporary, and he'd rally? Maybe I could manage his care from across the country at first, coming out every few weeks and stepping up my presence as necessary, as things devolved? I conferred with one of his doctors. And by "confer" I mean, I practically clutched the man's coat lapels, voice shaking, and asked, "What the hell do I do?" He told me my "plan" was a good one, and that'd I'd know when my dad would need more help. I'd know when things were getting worse.

He was right about that. Things got worse, fast, and I knew it. I saw it with my own eyes. Those first few nights, when we were making early rounds to specialists to get a plan of care in place, were hell itself. He had completely lost his appetite, and dropped 20+ pounds in a matter of a couple weeks. He was consequently too weak to move much, but so mentally agitated that moving around was all he wanted to do. The cancer had spread from his lungs to his ribs and spine, and he was incredibly uncomfortable, even with the morphine. He was depressed and afraid. He'd sit in his office chair for five minutes before insisting on moving to the living room sofa, which after another five minutes, he'd want to get up from, and go lay on the bed. He didn't want to wear pants, and I couldn't get him to stand in the shower long enough to wash off. Incontinence kicked in. We (meaning me) were still tweaking his morphine dosage, trying to find a happy(?) medium between lucidity/pain and bombing him into a speechless semi-coma.

It broke my heart to watch my father, always the vainest man I'd known, forced to abandon his dignity in such a manner. As for me, I had no clue what I was going to do. I had no idea what I was facing, or how long my father was going to be like this. It was clear as day I couldn't leave him and go back to California. Did that mean I had to move out here for the next half year, year, to be his sole caregiver? Would I even be able to do that?? What the hell did I know about caring for a sick person, much less one who was dying? Visions of me trying to bathe him, taking care of his bathroom and hygiene, spoon feeding him and checking his IV, managing all those medications several times a day, etc. wracked me. What. The. Fuck.

I was bewildered and lost. When the occasional nurse or insurance person or hospice worker that I spoke to found out I was handling everything completely on my own, the compassion and solicitousness with which they responded broke me every time. I'd chin up and thank them politely for their concern, but inside, the little girl in me was throwing pity party confetti in the air: Yes! I know! It IS incredibly unfair, right? How am I supposed to do this?? After a while, I stopped pretending to be strong and just let them throw their arms around me for a virtual hug.

The kindness of strangers saved me in those days - the acknowledgment and validation that no one should have do what I was doing, alone.

And so the second week went, with him leaning on me more and more every day, literally and otherwise. He didn't want to eat, so every few hours, I'd spend several minutes trying to coax him into a few bites of ice cream, or chocolate milk - anything dense in calories, in an effort to keep some meat on his bones. He was completely at a loss re: tracking his medications, which needed to be taken every two hours. I couldn't trust him to remember, so I gave up on my fancy charts and checklists and just set my own alarm. He became disoriented and confused about place and time. I awoke on Saturday at three am to him calling me frantically from across the house. I found him fully dressed, sitting near the front door, convinced that he was about to be late for an appointment. When I explained that no, he had no commitments that day, he became inexplicably angry and threatened to hit me.

I'd take advantage of his moments of lucidity to talk to him. We even managed, in the first few days, to have a couple of restaurant meals. I sat across from my father and we looked at one another, the dead weight of his prognosis making each forkful feel like a thousand pounds of sand to swallow. We did our best, though, with small jokes and the occasional sincerely loving exchange. I told him in no uncertain terms what he meant to me, and how I credit all my favorite parts of my personality to him. He told me that despite what I'd convinced myself of, he was incredibly proud of me, of who I'd turned out to be.

Back at home, the restlessness was a killer. He just refused to stay still for more than a few minutes at a time. But with every hour, he lost more and more strength and balance. Each time he wanted to move, I had to be there, lest he go crashing to the ground. At first, the support of my shoulder was enough. Then, he'd need me to walk backwards in front of him, so he could hold my outstretched arms. By the time I went to buy him a walker, he was so frail from lack of food that falling was a near-constant concern.

And then he did fall.

At 2am.

And I couldn't get him back up. And he couldn't get himself back up.

Just that morning, he'd been enrolled in in-home hospice. We'd been at the oncologist's, and I had pulled him aside, wild-eyed with lack of sleep, and said, basically, "Look. If you think he's strong enough to undergo several hours a week of chemo, you're out of your mind. And aside from the issue of chemo, I need help. Badly." The doctor agreed that it was time for hospice, even though he still felt confident that my dad could do chemo. We went home and I spent the afternoon learning just how much support I was about to get - I knew nothing whatsoever about hospice. As it became clear that I would have a team of professionals acting as reinforcements, I slowly let more oxygen into my lungs. I can do this, if I have help. Help is coming.

Help came that very afternoon. He was enrolled, the paperwork was signed, and all the ugly but necessary documents placed on file (his living will, his DNR order, his funerary wishes, etc). A hospital bed was set up in the living room, because my father refused to give up the ghost on the waterbed in his bedroom. He was still adamantly insisting, even in his degenerative state, on climbing in and out of it all day and night.

That's what he was doing, when he fell. Trying to get out of the goddamned waterbed. And I was helping, but not well enough, obviously. Because suddenly he was on the ground, moaning in pain, and I couldn't do a fucking thing about it other than try to dial down my hysteria.

That was one of the hardest, most awful moments of the whole ordeal. But it was by no means the worst. No, cancer is an endless swag back of heartbreaking surprises!

Anyway, I called hospice, who sent help as quickly as possible. It took almost an hour. During that time, I ostensibly sat with my father, covered him in a blanket, held his hand, propped his head, and talked to him (he didn't talk back). But what I was really doing was facing the fact of my father's impending death, and taking the first wretched step towards accepting it.

The EMTs arrived, and lifted him into bed. I got more What, wait? It's only you here, taking care of him? type pity. I ate it up, greedily. His hospice team's head nurse, upon learning of this incident, upgraded him to continuous care - I was told as much over the phone. By 8am, a certified nurse would be there to help, and, I was told, there'd be someone staying with us, at the house, 24-7 from that point on.