In the Midst of Things

The day my mother was released from the local hospital where she had been treated for a hemorrhagic stroke, we transferred her to the rehab wing of a “skilled nursing facility”(read “nursing home”) where physical therapists would work to restore her mobility, coordination, and speech. Medicare would cover 45 days of these treatments.

I had little hope, however, that they could restore my mother’s gait, her command of language, or her capacity to reason. Those powers had already dropped away, step by gesture, word by syllable, syllogism by premise, over the past few years.

I knew too that my mother would not be leaving the nursing home at the end of the 45 days. This was not the first stroke she had suffered, only the latest and worst. Their effects, combined with her advanced Parkinson’s disease and increasing dementia, made it impossible for my father and me to care for her safely at home any longer.

Before her illness, denial had never been part of my mother’s nature. She was a woman who believed in facing up to facts, especially unpleasant ones. Among these was the fact that we all die. She was fond of quoting Psalm 90: The days of our years are threescore years and ten; and if by reason of strength they be fourscore years, yet is their strength labor and sorrow; for it is soon cut off, and we fly away. Ever since she’d attained three score and ten, she’d often professed her willingness to depart this life anytime the call came.

She was well on her way to the outer limit of the biblical fourscore years that day I engineered her removal to Fair Acres. Years ago she had taken every precaution to prepare for the day she would fly away, including updating her will and pre-paying for her funeral. But neither of us had prepared for the long slope of physical and mental decline.

My mother had watched both a younger sister and her closest friend die of breast cancer after suffering through agonizing radiation and chemotherapy. “I don’t want that,” she had told me, long before her own illness overwhelmed her. “It’s too much pain for only a few more months of life.” She little knew then how long her own private purgatory would last, nor how much pain it would cost.

For my mother, death, though an unpleasant fact to be faced, was “natural,” and natural was the moral peg on which she hung decisions about her body. She had refused hormone-replacement therapy to alleviate her osteoporosis. To her, estrogen after menopause went against the natural order. A woman’s body stops producing estrogen for a reason—so you won’t go on having babies beyond your ability to care for them. Keeping her hormones at the level of a 20-year-old’s was not in line with what she saw as nature’s intent.

My mother had worked for decades as a medical secretary, absorbing whole dictionaries of Latinate terminology, yet “natural” remained a metaphysical issue for her. In her own private lexicon, “natural” referred to the created order, which by and large expresses God’s purposes for the world. Health comes from working within that order. We violate its boundaries at our peril. But live long enough, and your bones will thin, your arteries plug up, your pancreas shut down. It’s nature’s way of showing you the door. Keep asking “what’s natural?” long enough, and the answer, eventually, is death.

Facing this fact served my mother well enough for more than seventy years. She had done everything right. She was never overweight, ate a balanced, healthy diet, exercised regularly, took her vitamins, brushed and flossed. This temple of the Holy Ghost had been maintained in topnotch condition. Her only adult illnesses had been colds and flu. Then she developed Parkinson’s disease.

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.

It almost undoes me. Until I saw this list, most of my understanding of what we have come to call “end of life issues” I’d gleaned from movies—those scenes of the supporting actor lying unconscious, swathed in pristine sheets and hooked to a panel of gently beeping monitors. The document I now hold is uncomfortably specific. It breaks down those “life-sustaining procedures” my mother’s Directive to Physicians had only mentioned generically.

At the top of the list are machines that artificially stimulate the heart to beat or the lungs to breathe. I instantly check those off. The next choices are a bit harder. Feeding tubes stuck directly into the stomach in the event the patient is unable to swallow. Ventilators. Artificial breathing devices.

“Does this mean oxygen tanks?” I’ve seen people in supermarkets hauling around their portable green cylinders. Those people were obviously not in imminent danger of dying. The woman assures me that oxygen tanks are not included in those “breathing devices.”

That marks the end of the easy choices. After that, the list gets down to “life sustaining medications.” Chemotherapy, for instance. Antibiotics. Intravenous drips. Blood transfusion, tracheotomy, intubation. I suddenly don’t know what to do, what I want. What my father wants. What my mother would, in her right mind, want for herself.

I close my eyes and recall her sitting beside me on her front porch two summers ago. She is having a particularly good brain day and is scanning with narrowed eyes the tops of the tall oaks for the mockingbird we can hear but not spot.

“I just pray I don’t lose my mind,” she says. “I think I could bear anything but that.”

Yet that is the very condition that has befallen her. Her worst fear has, in a final irony, defeated the willpower that has seen her through every other disaster of her life.

My mother’s family is famous for its willpower. When I was a toddler, before technology made it possible to keep badly injured or desperately ill people alive, my great-grandmother, a blind and frail octogenarian, had died at home. She simply refused to eat any longer. At 91, my maternal grandfather broke his hip and refused to get up again following successful surgery to repair it. My mother brought him to her house to die, a feat he accomplished in less than two weeks.

But my mother did lose her mind and with it her resolve. The person she had been on that fine spring day we searched the oak branches for the mockingbird would have rejected her current diminished existence. But the person she has become can no longer choose what the earlier version of her self surely would desire.

So, as her designated surrogate, what is my responsibility? What is my right?

I ache for my mother, who hasn’t been left with any understanding of her condition or any choice about how to face it. In the end, I check off only the top items on the list, despite what my mother, on one of her last lucid days, had told me she wanted. Instead, I go by what I believe my father would reasonably agree to, were he not so worn down that I dare not even read the list of choices to him.

On that morning, both my father and I believed that my mother would not live to see another birthday. Nevertheless, time would reveal her body’s resolve to keep itself alive, no matter the condition of her brain. One thing I learned over the course of these years is that the body has a mind of its own. She would make several more trips by ambulance to the local hospital until finally a hospice doctor certified that she had no more than six months of life left in her.

As it turned out, with the extra care provided by hospice my mother lived for almost another year, though for the last few months she could neither see, speak, nor swallow solid food. On the last day, I stood beside her, stroking her arm. I realized she was gone only when the flesh grew cold to my touch.

This question of when and how life ought to end has no easy answer. In fact, it most likely has many answers. Just like the meaning of life. A generic reason for human existence, even the one learned in the Shorter Catechism—to love God and enjoy him forever—doesn’t show us exactly how we are to fulfill our individual destinies. Everyone’s life means something different. And we can’t really know what that meaning is until that life is finished, complete. Sometimes not even then.

I did not want to make life-and-death decisions for my mother. Or for God. I am still haunted by doubts about the decisions I did make. Should I have brought her home rather than admitting her to a nursing home? My father and I visited her daily, he in the morning, I in the afternoon. She disliked Fair Acres in the beginning, but the terrors she suffered at home never assailed her in the nursing home. The nature of her fantasies changed there. When I arrived in the afternoon, she would tell me about the places she had been that day, to church or shopping, and the people she had seen, some of them long dead. She never walked again and could not even maneuver her wheelchair.

Nowadays, thoughts about my own dying run something like this: Okay, so I know I’m going to die some day. And though I’m willing to cooperate with possible cures for most diseases, some are either incurable or the cure at some point becomes worse than the alternative. I have a right, maybe even a duty, to accept the inevitable and refuse more treatment. To my mind, this doesn’t mean active suicide. Just the option to say “No thanks, I’ve had enough. Don’t try to help me any more.”

I pray too that when I come to my own last extremity, that it won’t stretch itself out as long as my mother’s did. I dread that end as much as she, in health, did. Having learned the hard way the catastrophic financial cost of nursing homes, my husband and I bought long-term care insurance. But I have not told my daughters under what conditions I do or do not want to live, when or where they should “pull the plug.” I’m not even sure what I would do should I have to make such decisions for my husband.

We have recently had a flurry of funerals at our church, and the service for the Burial of the Dead in the Book of Common Prayer is becoming particularly well-thumbed. I’ve found that one of its petitions answers my need to be honest with God: Help us, we pray, in the midst of things we cannot understand, to believe and trust in the communion of saints, the forgiveness of sins, and the resurrection to life everlasting. Maybe someday—Judgment Day?—l’ll find out if I did the right thing, made the right decisions. But in the midst of things, I take comfort in the mercy of those words.

Virginia Stem Owens is a novelist, essayist, and poet. Her most recent book, written with David Clinton Owens, is Living Next Door to the Death House (Eerdmans).