Exactly One Year Ago Today

Exactly one year ago today, on March 31, 2013, my dad announced that he was ready to begin the process of dying.

It was Easter Sunday, and we'd all come home. I'd flown in a couple of days before. My older sister and niece and great-nephew had come in from Portland. Coit was there. I suppose you could call him a dear family friend but he's really family.

My dad was finally getting over the symptoms of a virus that he'd contracted earlier in the month, a nasty cold/flu that had sapped what little strength he had. (Colds are deeply concerning for late-stage ALS patients. With such weakened muscular strength and control, it's very hard to clear out mucus by coughing or blowing one's nose. Pneumonia is a real concern and a frequent cause of death.) On March 17th, he'd gone to the emergency room complaining of pain in his chest. After a long wait and many anxious phone calls between my sister and me, the doctors came with a diagnosis of shingles, an insult-to-injury opportunistic secondary (or more accurately, tertiary) illness that demonstrated how deeply diminished his vitality really was.

I talked to my mom later that evening, after they got back from the hospital. She was understandably exhausted. I remember looking at my calendar and telling her that I was in a really busy stretch and didn't think I'd be able to get home until early May. I could feel her deflate a little over the phone. Something was different this time. It was with a feeling of something overlooked that I noticed that Easter was early that year, two weeks away, and that I had that weekend free. On March 18th I booked my flight.

"A la famiglia," my sister doubtless toasted at Easter dinner. She and my dad had watched "Moonstruck" together about 6,000 times over the years since her first marriage had imploded, and she and he had been leading us in that toast ever since, the movie's story becoming part of our story, the toast becoming our toast as well. We become that which delights us.

He'd been talking about going into a nursing home for some time, but now he was unyielding. He insisted that he now needed 24/7 care and couldn't get it at home. We disagreed. Hadn't we (and by "we" I mean "mostly my mom") figured out a way to handle his care all these years? Surely we could solve this problem too.

He was adamant, angry. "It's killing your Mama," he yelled. We thought he'd hate it. We certainly knew we hated it. He'd been saying for a few months that he felt a decline in his mental faculties, but we couldn't see any reason to refuse him the right to make his own decisions. We acquiesced.

I remember he was so tired. I remember thinking his fatigue was the result of the virus, and hoping that he'd get some rest and see some of his strength return.

But I was wrong. For me and the rest of us, used to dealing with his ALS as a not-insurmountable challenge--which is exactly how you have to think of a living with a relative's long-term illness--the nursing home became a logistical question. When would this happen? What do we need to do before it does? But for him, the physical act of moving out of the house was a statement. By removing himself from his home, he was preparing to remove himself from the greater situation. The fatigue from the recent illness went deeper than just its physical toll. He was done fighting. 21 years had passed since his initial diagnosis of ALS, and the fight that had carried him so far beyond the grim initial prognosis (five years, the doctors had told him) had run out. It was time to rest now.

This is all obvious only in retrospect. For us, accustomed to dealing with the issues his illness raised as just part of life--his and ours--it fit the pattern to see this change as just one more thing and wonder where it would lead. He was clearly weaker than ever before, but the general trajectory of his illness had been a decline and then a plateau, a decline and then a plateau. It was easy to assume that pattern would repeat yet again. But this time was different. He had made the decision that it was time to die. Of course he didn't say that. He said instead that he wanted to go into a nursing home, and did. And all the familiar patterns left with him and never, ever returned.