Not Dealing with Death and Dying

Around the time Dad started getting really sick (perhaps when he went to see that quack doctor), I stepped into Skylight Books and bought the book Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness. I read it in a bunch of quick gulps that weekend, but it all seemed distant, something that happened to other people. The anecdotes, the astute observations, the practical information contained within didn't seem to apply.

After Dad died, I sat down with the book again. Yes, I know: hindsight is 20/20. But what I found was something stranger. Rather than seeing the situation echoed in the book, I still couldn't find it. Sure, my reactions to his illness and death seemed normal enough. But Dad's reaction to his own illness and impending death? Not so much.

In this book, there wasn't an anecdote that described the ill person as refusing to acknowledge his illness as terminal. Everywhere in the book, the family members were the ones unwilling to discuss the inevitable, keeping up the denial for as long as possible, while the dying person wanted to discuss the end game. In Dad's case, though, my sister and I knew early on how this was going to end. It sucked, but we knew. And when the illness quickly took over his life, reducing it to rubble, we longed for some sort of agreement from him. When was he going to utter the words "death," "dying," and "terminal?"

The answer was never. He charged ahead with more treatment, more hospitalization, more blood transfusions, even as it became clear it was futile. He never once admitted he was dying to us, only saying things like, "I must get stronger." This was perceived by many as evidence of Dad's strength and warrior spirit. I guess I don't really see it that way. I think he was terrified and pissed, and remained that way almost until the end, when he was too out of it to do or say anything anymore, and hospice was finally called.

I felt bad, not being able to be a cheerleader. God knows, my stepmother and stepsister certainly were. Dad's friends certainly were, marching into his hospital room and telling him he looked "great," which was a total insult to everyone's intelligence. The Death Elephant was lounging prominently in the middle of the room, taking huge dumps, and these people were just side stepping it constantly. It made me feel crazy.

I do believe that, toward the last week or so of his life, he did finally admit it to my aunt, his sister. She came to see him, and he told her, "Well, I guess the next time you'll be here will be for a funeral." But he never said anything of the kind to us. Unlike so many of the dying in the book I read, Dad never discussed his arrangements in his will, never truly specified memorial service options, never truly said goodbye. And that's a shame, because he was given time to do all those things, time that some people don't get.

I know that ultimately it was Dad's choice, because it was his illness and his death. But when an illness goes on for a long time, it radically affects the family. It wasn't just him anymore. I worry that he thrashed and fought in terror and denial until he ran out of energy, and then didn't have any peace at the end. And although I think I said everything to him I needed to say, it was mostly met on his end with silence (and not just because he had trouble talking). How lonely for everyone.