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A small bundle of tissue located in the middle of her brain, the substantia nigra, simply decided to die. And like thousands suffering from this degenerative disease, she wanted to know why.
If she had committed no sin against her own body's health, she began to wonder if perhaps she had erred in some other way. In her darker moments, she suspected she was being punished for some moral or spiritual lapse. That mere random chance should pick her out for this indignity was a notion she struggled against. She would rather be guilty than live in a lottery universe. Personal liability, after all, is the price you pay for believing that order rules the world. "Natural" means there has to be a reason, cause-and-effect, a cosmic quid pro quo.
But as the cells continued to die, and the strokes began, her capacity for rational thinking dwindled. With each assault on her brain, what we learned to call my mother's "confusion" grew. The world became for her a terrifying place. Danger lurked in every corner and under every bed. Gangsters lived in the attic. Buddhists were building heathen temples in the woods behind their home. Wild Indians danced on the front lawn at night.
To humor her, my father, who had already achieved fourscore years and was still recovering from bypass surgery, climbed on the roof to drive off marauding aliens, wedged chairs under doorknobs, and suffered her accusations of his drug trafficking, if not gladly, at least patiently. My attempts to keep him from patrolling the attic and roof top were ignored. "If it keeps her happy …" he said forlornly.
After spending the morning packing up my mother's belongings from the hospital room and engineering her transfer to Fair Acres, reputed to be the best nursing home in our town, I am sitting with my father on one side of a highly polished conference table reserved for the admission consultation. On the other side sits the staff member who handles the procedure. This meeting will turn out to be the only significant conference our family will have with the staff during the five years my mother will live here.
The woman on the other side of the table leans forward and passes, one at a time, a series of papers for my father and me to sign. To move the process along, she summarizes in a few words the content of each. Neither of us reads the documents. My father is already beginning to flag and is often in tears. He has long ago delegated the decision-making to me.
A few years earlier, both my parents had given me Durable Power of Attorney for Healthcare so that, in the event of their inability to make medical decisions for themselves, I would take on that responsibility. They had also signed "living wills," sometimes called "directives to physicians." These documents stipulated in a general way that, should two physicians certify them to be in a "permanent and irreversible condition" from injury or disease, and if "life-sustaining procedures would serve only to artificially postpone" the moment of death, then those procedures should "be withheld or withdrawn," and my mother and father should be "permitted to die naturally."
Those directions had seemed pretty clear to me at the time. But now the woman on the other side of the table says as she hands me yet another form, "You need to check off the measures you do not want us to use for your mother."
I glance at the form. It lists medical interventions in order of decreasing complexity. I do not show this list to my father. Its specifics would undo him.
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