A life worth living

I knew exactly what they meant, the preacher and the lawyer, about my father’s quality of life in the years before he died. I know both of them well enough to know that their intent was to comfort, to acknowledge that Dad’s last decade was hard and that finally he was better.

They intended no offense, and I took none. For I, too, have occasionally indulged in the same misapplication of meaning as I considered, in the abstract, the matter of “quality of life,” a description rendered benign by its familiarity, which is the purpose of euphemism—to declaw accurate characterization.

But in the here and now, two days after my father’s passing, their pronouncements stung. Their words were a judgment of an actual life, my father’s, and indirectly and unintentionally, an indictment of my mother’s devotion to him.

The preacher, a long-time friend who was my parents’ pastor for more than 20 years, lives in another state now. He had been in town and visited my parents the afternoon that turned out to be my father’s last in the home in which he had lived for more than half a century.

With the long drive only 10 days behind him, the pastor alerted us that he wouldn’t be able to return for the funeral. At Mother’s request, then, he wrote a eulogy, which he closed with these words: “I have two feelings on this day. One is deep grief. I mourn the loss of one of the really good guys in this world. … The other feeling is one of relief. Harold was disabled for so many years and toward the end, there was no good quality of life.”

Then came the lawyer, a friend from high school, who offered a similar characterization as we talked at Dad’s visitation.

No good quality of life, they said.

DAD WAS POSTED to Fort Bliss, a fitting assignment given that he found the woman he would marry in the same town as the Army post. My parents met in December 1952 in Sunday school at Immanuel Baptist Church in El Paso, Texas.

Dad, fresh from Fort Lee, Va., already had his orders to go to Korea for a six-month tour. He and Mother discussed a pre-deployment wedding, an urgency very unlike my staid, unsentimental, and pragmatic father, who never bought a product without first consulting Consumer Reports.

Although Mother was inclined to marry 2nd Lt. Harold Eugene Grelen, who ran the bakery on Fort Bliss, they chose practical over romantic. So he left for the conflict a single man. The war shut down practically upon his arrival: Dad touched down in early July, and on July 27, 1953, the armistice was signed.

On Dec. 21, 1953, a year after my parents met, after only six months of a courtship that was interrupted by an international conflict, and only two weeks after his return from Korea, Janie Charlene Miser took my father’s last name, and the two of them took off for Ruidoso, N.M.

WITH DAD’S long and mysterious decline behind us, we are comfortable that Lewy Body Dementia is the accurate diagnosis, with the added complication of Fahr’s syndrome and peripheral neuropathy, which shut down his feet. In addition to Lewy Body and Fahr’s, Mother and Dad considered many another diagnosis over the 20 years: Parkinson’s, Parkinsonism, and depression were the primary guesses.

My father retired from the U.S. Forest Service in the fall of 1985. Technically, you could mark that as the beginning of his end, although we can’t show any cause and effect. Six months before his retirement, he suffered an acute reaction to a sulfa drug, which required a hospital stay and damaged, apparently, his vocal cords. He never really regained his voice.

The next things to go were his agility and his cognition. The man who could fix most anything no longer could patch a hole in Sheetrock, much less hang a ceiling fan. Without a good diagnosis, pharmaceutical aid was guesswork. Some medicine seemed to help, most of it didn’t. Mother marks 2004 as the year Dad went to bed to stay.

He could sit up in his hospital bed, feed himself. When my brother-in-law Ramon or I were there, we would put my dad in his wheelchair for a meal with his family at the big table or transfer him to the chair lift in the living room so he could watch us come and go.

Mother once put Dad in their car (with help, of course) for a visit to my home in Maumelle, Ark., and then the three of us traveled to Nashville, Tenn., for a visit with his brother, the last time they ever saw each other.

Dad became less and less lucid, but you could tell he was still in there. He would cry. Sometimes, rarely, you could coax out a laugh. Two-way conversation, however, pretty much ended about 2005, although Mother usually could decipher his efforts to communicate.

She attended to Dad’s every need—meals, medicine, hygiene. The hired hands whom she paid to help two hours a day on weekday mornings often were more hindrance than help.

For the past five years, Dad’s life was a loop of bed; breakfast at the kitchen table; a stop in the bathroom for a shave, shampoo, teeth cleaning, and application of deodorant; and trips to doctors and the dentist.

Mother never neglected him, never once complained. She never lamented that she couldn’t leave home without arranging for a sitter, never mentioned that she couldn’t leave town, period. She always referred to herself in the plural as “we” and “us.” If we were in the kitchen or living room, she often herded us into his room so he could hear, could be near. A half dozen times a day, when he would slide west and his feet would hang off the end of the bed, my 100-pound mother would straighten him and pull his 185 pounds back to the other end. She changed his clothes and changed his sheets all while he lay in bed, a tough task for even a young trained nurse. Until April 25, Mom was still doing that—at the age of 83.

Dad’s last evident pleasure in life was food, and Mother is a great cook. In 2008, however, life tried to deny him even that. Doctors told Mother that Dad was aspirating food and recommended a feeding tube. Mother said “no.” At the expense of even more of her time and energy, she liquefied his meals and fed him. She crushed his pills and gave them to him in a spoon of applesauce. She gave him his coffee and sweet tea by the teaspoonful.

Dad loved dessert, and with Mother in charge, Dad rarely missed, even at the end, when Mom blended the desserts she made, usually from scratch, into liquid. Or mashed bananas into vanilla ice cream.

At bedtime, after Dad was clean and brushed, Mom would tuck him in and lower the bed in the bedroom they had shared until they no longer could. She would plug in Andy Griffith singing hymns or another of the two dozen compact discs she had accumulated for him. And when she finally turned in, she slept across the narrow hall of their small house in a twin bed. With her door open.

TO SAY THAT MY FATHER’S life lacked good quality implies a call to action. If, say, the quality of my father’s life was poor because he didn’t have food or a warm bed, we could easily have improved his living conditions. But the impediment to Dad’s so-called good-quality life was an apparently terminal condition that lingered for years and bound him to bed, prevented him from verbalizing his wishes, so what were we to do? Or what were we to withhold to improve the quality?

Who determines whether a life is sufficiently pleasant and productive to qualify for further care and attention? I speculated to myself occasionally that if a panel of doctors had been assigned to study Dad’s case through the prism of our current definitions and discussions of healthcare, Dad probably wouldn’t have qualified for much. He could not do a single thing for himself for six years before he left us. At any point during those years, my father, left to himself in his bed, would have died in a matter of days.

But he wasn’t left to himself, and however bleak his life may have looked, I don’t think he would have rated the quality of his life as poor. We can’t know, of course, what he was thinking or whether he was aware of his limitations. I don’t think, however, he would have preferred death to the quality of his life, and he was the only one qualified to rate it.

We hear of people who have lost the will to live; my dad didn’t. Exam after medical exam, he amazed the doctors and nurses. His heart, his blood pressure, his blood counts, his cholesterol—all good all the time. Based on the testing, there was no apparent medical reason for Dad to be in the bed.

If the quality of his life had been an issue for him, might he have despaired and slipped away years ago? Might he have willed himself to die? Maybe. Would he have preferred better health? Little doubt. But he lived with the health he had. Maybe deep down my father hoped and prayed and believed that tomorrow God would set him walking again, hope that made his life today tolerable, the hope that makes all our lives tolerable. Who are we to deny him his hope and trust in his Creator?

What we really are talking about is the quality of physical health. Poor health is not necessarily the equivalent of a poor quality of life. We want to assist those who are in poor health, to make life better. But if we can’t make a life better in ways that are readily apparent, do we stop trying?

The quality-of-life question is born of self interest. A person in my father’s situation, we think, would be better dead than alive. The caregivers would be relieved of the work and sacrifice of giving care or spared the expense of paying others.

“Quality of life,” then, is subjective. From the perspective of the pastor and the lawyer, people who can still move about freely and care for themselves, my father’s life might have seemed to lack good quality.

But he—and we—would have missed much had he not lived that last decade confined to bed. He would have missed 10 years in the lives of granddaughters, who often stood by his bed to visit or who mugged for our cameras with him when he sat in his recliner or wheelchair. His children and his grandchildren would have missed the lessons in devotion, loyalty, and compassion my mother taught every day. My father would have missed that decade of love and attention from the woman who waited for him to return from the war.

Although our former pastor doubted the quality of Dad’s life at the end, he well knew the quality of my mother’s care for him, which he acknowledged in his eulogy: “When Harold and Janie took their wedding vows and spoke the words ‘til death do us part,’ they were spoken with clarity and commitment. Janie set the standard very high as she has cared for him through every day of the years of the illness. …”

To say that there was “no good quality of life” at the end diminishes, if not discounts entirely, the value of my mother’s love and devotion, and Daddy’s appreciation of her, although he couldn’t say so. Our pastor surely would not have deprived them of that.

IN THE SPRING of 2013, we persuaded my mother to visit us in Arkansas and my sister in Mississippi. Though her assent was reluctant and cut across the grain of her devotion and better judgment, she set Dad up for a three-week stay in a nursing home half a mile from their house; she could accept this only because my sister Julie, who lives in town, would be checking on him.

When Mom walked into his room after her three weeks away, Dad’s eyes—to use Mom’s word—brightened. He couldn’t say it with words, but his eyes said that the quality of his life had just improved. Had just, in fact, walked through the door. His living companion, not his living conditions, determined the quality of his life.

DAD WAS 84 when he went into the hospital late on April 25.

Nine days later, on May 4, my sister, Lori, was in the hospital room with our parents. She updated me by text message:

9:18 a.m.: His blood pressure has been going up. It is getting too high. With that & his constant moaning, the nurse thought he might need some pain med. He has been very restless since yesterday afternoon.

9:26 a.m.: His bp is 160/90.

11:52 a.m.: After pain med, Bp is now 178/100.

12:36 p.m.: He’s almost gone. Very bad.

My phone shows that my call to her connected three minutes later at 12:39 p.m., when Lori said two words: “He died.”

My mother and father fully lived out the roles God gave them, faithful to their commitment and vow until death parted them. Years ago Dad told me he believed Mom was his reward for remaining pure before marriage. And even as my dad approached his hour, right to the end, they were reaping the harvest of fidelity to God and to one another that my parents had planted 61 years earlier: An hour before Dad died, Mother was at his side, spooning broth from a bowl, nourishment for a soul and not only its vessel of clay. This is love that puts the sword to the euphemism, devotion that proclaims that the degree of quality in our lives is beyond mortal measure.

—Jay C. Grelen is a writer living in Maumelle, Ark., available via jaygrelensweettea.com