Death Consuming

No one ever tells you dying is so time-consuming.

My dad started dying the moment his brain was deprived from oxygen. On the surface, he survived. But he would, underneath the ups and downs of apparent recovery, be dying for the next 9 months.

At a certain point he knew he was dying before we did. We didn’t really believe it even the day of his death. Months before he asked my mom to write down requests related to his death, details about cremation, obituary, his finances. Details he should have had settled way before.

He was convinced he was dying even while he was in rehab for his stroke, the moments of triumph (standing up with help, talking again, swallowing) drowned out by his howling against his imminent death. We all laughed, thinking it was delirium talking. You aren’t dying, we’d say. You certainly aren’t dying here, the rehab doctors said.

He wasn’t fooled those last months of struggling to recover, in hospitals, skilled nursing homes and ultimately at home. Perhaps he realized that his brain was being eaten away from dementia, another form of dying.

His body wasting away. His disorientation and mood swings makes daily life intolerable. His refusing to eat. We had to be told at the end, when considering hospice that those WERE the signs of dying.

And dying was time consuming, when every moment was trying to keep him alive.

I feel guilty thinking about all the time we spent trying to keep him alive. I spent hours in which I could have been focused on my then 2 year old daughter. Hours on the phone, trying to convince hospitals to keep him because we didn’t think he was ready to go home. Hours researching how we could afford him to be cared for when it was clear the hospitals wouldn’t keep him anymore. Hours trying to research skilled nursing facilities since he still had Medicare days left before he had to go home. Hours trying to keep those skilled nursing homes from kicking him out, to be sent back to the hospitals, who were still eager to send him home.

Hours coordinating with the exorbitantly expensive care he’d have when he finally went home. Hours researching strokes and then dementia. Hours stretching before us like an endless death. Hours fighting with anyone and everyone.