The Long Vigil

“Is it wrong for me to be mad that Mom didn’t die?”

“No, but maybe it’s because I’m mad too… Mad for her. Mad for us. Mad at Dad. Mad at God. It’s not wrong to be mad at pointless shit. And all this seems pretty pointless…”

Mom’s condition had begun to decline. She was not swallowing the food and water we were spooning into her mouth. She was long past actively refusing by pursing her lips. There was no resistance nor cooperation. We could sometimes get her to take liquid if we dipped a straw, capped the top with a finger, inserted the straw between her lips and dribbled it into her mouth. Eventually that became dangerous. If she didn’t swallow, she would choke. Liquid in her lungs would give her pneumonia, but at this point pneumonia would be her friend. Hospice had told us “it’s a natural process, don’t force feed her, let her body tell you what she wants or needs”. We didn’t know if her body had forgotten how to swallow because of her dementia, or if it was actively rebelling against being sustained any longer. Either way, she had been losing more and more weight over the past six months and her skin looked like crumpled paper on her protruding bones.

Mom’s advance directives were “no artificial life sustaining interventions” including feeding tubes and breathing intubation. But for almost three years she had to be fed pureed food with a spoon and a canula was in her nose feeding her oxygen 24/7. The spoon was her feeding tube. She could refuse it, but she was no longer of “sound mind”. Even if she refused it one minute, she might change her mind the next. Dementia is the blessed disease of the present moment: Every minute is a new world, and the last minute’s world and reactions to it are forgotten including her own personal condition and pain. The same question asked 30 seconds apart might get opposite answers. Even though I think I knew my Mom well enough to know what she would want in her right mind, I could not take her spoon and straw away. Even when all the “hospice signs” of her body giving up were there, I still had to try food and drink yet one more time. I didn’t have the guts for a passive euthanasia even though I had lots of Hospice comfort meds on hand that would kill any residual pain or awareness of what was happening. I had contemplated many times asking her if she wanted me to “send her home”. (She would often point to the ceiling if we asked her where she wanted to be.) But if I asked, I knew at some point she would say yes. I’d then have to decide whether or not to accept that as a "momentary sound mind moment” and just get the whole thing over with. But I never asked, mostly because I didn’t want to put myself in the position to follow through if she did say yes, even if I knew it would be truly what she would have wanted if she were of sound mind and was fully aware of the condition she was in and her prognosis.

My daughter asked, “So what are you going to do when she stops eating? Let her starve to death?”

“Yes. What else can I do? I’m not going to be Dad.” Even though I kind of was already.

It took about two months for Mom to die once her steep decline began. There were times we were sure she was not going to make it through the night. At those times we took turns keeping vigil by her bedside. We would read the Psalter or “Glory to God for All Things”. In the morning when our daytime caregiver arrived, Mom would be awake and responsive. She would rally for a couple days then falter into a near comatose sleep again. And the uncertainty, the futility, the helplessness and grief crumbled into an amorphous anger.

We were no strangers to the “Dying Rollercoaster”. We had the 40 year death march with my Dad and his heart conditions. For almost twenty years we’d tell the grandkids, “this could be out last holiday with Granddaddy…” About ten years ago my daughter said, “You’ve been saying that every year for a decade, you know. Maybe we just need to live.” We went through it with my wife’s father when we were taking care of him. So the first couple times Mom was “on her way out” but rallied, it was darkly funny… fooled again. She was giving Dad the finger one last time. She was channeling her mother who, at 80-something fought off two young purse snatchers in a mall parking garage. They broke both of her arms for an empty purse. “Those goddamn punks weren’t going to get my purse!” And no one, not even all the people we would invoke at bedtime prayers with her, “Willie, Sam, Vangie, Nana, Apo, Patrick, Daddy… they’re all waiting for you on the other side…” would call her shots or manipulate her into giving up her life. She’d give it up when she was damn good and ready.

But after the fifth or sixth time it became just dark. No one but God could take her because I couldn’t give her up, and she wasn’t giving up… or if she had given up, her body wasn’t cooperating with whatever mind she had left. What God could watch this and let it go on and on? I had the “power” and the means, but I was a shitty god myself and wouldn’t stop the misery either. Perhaps partly because I knew that if I’d wielded my godlike powers and taken her life there was an admixture of the selfish slag of my humanity still in the selfless godliness I had been trying to refine within me for decades. No matter how much or little, it was enough to make the act impure.

Hope only flickered on the far horizon of eternity. It did little to illuminate the dark path through a prolonged here and now. Small glimmers of hope were but fireflies. When hope betrayed, all we had left was anger.

“Be angry and sin not,” St. Paul says.

There is no bullet point tutorial on how to be angy at life, death, sickness, God, ones self, circumstances, our own emotions and desires, futility, our powerlessness and our powers we dare not employ, and not sin in some way or in many ways at once. We gave thanks for our daily bread and asked to not be led into temptation.

Then we ate our supper in silence and yet once again, waited.