Janie Miser and Harold Grelen on their wedding day, December 21, 1953, in El Paso, Texas.
December 21 would have been the 63rd anniversary of my parents’ wedding. My mother still lives in the house she and Dad bought in 1962. At 86, she still rakes the pinestraw in their big yard and drives wherever she needs to go, including Pineville Park Baptist church, where she still helps with the Wednesday night supper and cares for the three-year-olds in the nursery. In their faithfulness and devotion to one another, they set the standard.This first appeared in WORLD magazine in July 2014.
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I knew exactly what they meant, the pastor and the lawyer, when they described my father’s quality of life in the years before he died. I know both 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 defang accurate characterization of its accuracy.
But in the moment, 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 pastor, 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 on 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 ten 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 he and I talked at Dad’s visitation.
No good quality of life, they said.
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The Army sent Dad to El Paso, Texas, a fitting assignment given that he was about to find romantic bliss in the home town of Fort Bliss. Dad oversaw production of pastries and desserts at the post’s bakery. My parents met in December 1952 in Sunday school at Immanuel Baptist Church.
Dad, fresh from Fort Lee, Virginia, already had his orders for a six-month tour of Korea. My parents-to-be discussed a predeployment wedding, but Dad left for the conflict as a single man. The fighting ended practically upon his arrival: He touched down in the first days of July, delivered a mysterious package to headquarters in Seoul (that the Army sent with him on a commercial flight and armed him with a pistol), and on July 27, 1953, as Dad left a movie theater, he learned the two Koreas had signed the armistice.
On December 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, New Mexico.
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With Dad’s long and mysterious decline behind us, we are comfortable that Lewy Body Dementia is the accurate diagnosis with Fahr’s syndrome and peripheral neuropathy in his feet as added complications. Over the twenty years, Mother and Dad entertained many another diagnosis: depression (the notion of which Dad resisted vehemently), Parkinson’s and Parkinsonism.
My father retired from the U.S. Forest Service in the fall of 1985. We could mark that as the beginning of his end, although we can’t show cause and effect. Six months before his retirement, he suffered an acute reaction to a sulfa drug, which required a hospital stay and damaged his vocals cords. He never really regained his voice.
The next things to go were his agility and his cognition. He broke his wrist in a fall. The man who could fix most anything no longer could patch a hole in Sheetrock much less hang a ceiling fan. He was only seventy-four. Mother marks 2004 as the year Dad went to bed to stay.
For a while, he could sit up in his hospital bed, feed himself. A hired hand would show up at four in the afternoon, transfer Dad from bed to a recliner in the living room and return at nine p.m. to take him back to bed. When my brother-in-law Ramon or I were there, we would wheel Dad to the big table for meals or transfer him to the reclining lift chair 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 our home in Maumelle, Arkansas, and the three of us traveled to Nashville, Tennessee, for a visit with his brother, the last time they ever saw each other. (Uncle Tom, a year older, died first, six years ago, in the VA Hospital in Murfreesboro.)
Although Dad became less and less lucid, 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 words.
Mom attended to Dad’s every need – meals, medicine, hygiene. The aides she paid to help two hours a day on weekday mornings often were more hindrance than help; more than once, after one had started work for Mom and Dad, the agency discovered a criminal history and had to recall the employee.
For his last 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 once 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 in “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 in his hospital bed and his feet would hang off the end, my hundred-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 gut-busting task for a young trained nurse. Until April 25, that’s what Mom did. At the age of 83.
Mother’s table always was one of stops for the revivalists visiting our church (back when we gave the preachers a seven-day week, and breakfast meetings and night meetings to revive us). That was a good thing for Dad, whose last evident pleasure in life was food.
In 2008, however, life tried to deny Dad even that. Doctors told mother that he was aspirating food and recommended a feeding tube. Mother, meek woman that she is, said, “No.” Unequivocally. At the expense of even more of her time and energy, she liquefied his meals and fed him. She crushed his pills or sprinkled them from capsules and administered them with a spoon of applesauce; she served him coffee and sweet tea by the teaspoonful.
Dad especially loved dessert, and with Mother in charge, Dad rarely missed one, even at the end, when Mom liquefied the desserts she made
At bedtime, Mom would tuck Dad 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. (She rarely listens to music herself.) And when she finally turned in at night, usually near midnight, she slept across the narrow hall in a twin bed. With her door open.
She always arose at seven to give him his thyroid pill, and she rarely went back to bed.
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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 of life was an apparently terminal condition that lingered for years and bound him to bed. This disease prevented him from verbalizing his wishes, so, since he couldn’t tell us his preference, what were we to do? Or not do? 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 knew that if an insurance company assigned a panel of doctors and lay folk to study Dad’s case through the prism of our current definitions and discussions of healthcare, Dad probably wouldn’t fare well. He could not do a single thing for himself. As far back as six or seven years before he passed, my father, left to feed himself and otherwise fend for his own needs, would have died in a matter of days. What resources would a committee decide it should grant my father to keep him alive?
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. In any case, however, he was the only one qualified to rate it. Since he couldn’t verbalize the rating, should he then lose the life-saving benefit that we err on the side of privilege that we err on the side of his
We hear of people who have lost the will to live and seemingly will themselves to die. 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 willed himself away years ago? Would he have preferred better health? No doubt. But he lived – lived – with the health he had. Maybe he willed himself to live. Maybe, deep down where we couldn’t see, my father prayed and truly believed that tomorrow God would set him walking again; maybe he persevered on hope, hope that made his life today tolerable, the hope that makes all our lives tolerable, a hope that is higher and more holy than the fabled and so-called instinct to survive. Who are we to deny him that chance and hope, to deny him his trust in his Creator?
What we really are talking about is the quality of physical health. Poor health does not necessarily equal 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 only an obvious improvement, do we stop trying? If a spoonful of medicine doesn’t eliminate the symptoms that we can see, do we decide the life isn’t worth the effort?
The quality-of-life question is borne 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, or spared the expense of paying others to care for him. Is it wrong to consider the caregiver’s convenience?
Quality of life, then, is subjective. From the perspective of our pastor or the lawyer ~ or of my own perspective ~ we who can still move about freely and care for ourselves, my father’s life was not so good.
But he ~ and we ~ would have missed much had he not lived that last decade confined to bed. He would have missed ten years in the lives of his granddaughters ~ Samantha, Rebekah, and Madeleine ~ their bedside visits.
He wouldn’t have enjoyed them mugging for our cameras as they loved on him in his recliner or wheelchair or hospital bed. 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 come home from the war.
Although the pastor didn’t understand the quality of Dad’s life at the end, he well knew the quality of my mother’s care for him: “When Harold and Janie took their wedding vows and spoke the words ‘til death do us part,’ ” he wrote in his eulogy, “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, then, diminishes, if not discounts entirely, the value of my mother’s service, and Daddy’s appreciation of her, although he couldn’t say so in so many words. I know our pastor, and I know he surely would not have deprived them of that.
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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 lives in town near them.
Mom never said a word, but I know enough now to realize the difficulty of that separation. When Mom walked into Dad’s 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 declared 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.
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Dad was 84 when he went into the hospital late on April 25. Our kid sister, Julie, was there for the duration. I spent most of a week. Lori, the middle kid, arrived the day after I left. On Saturday, a week and a day after his admission and surgery, we thought that Dad was going to surprise us again. The next day, however, May 4, Lori and Mom were in the hospital room. Lori was updating 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. She said: “He died.”
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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 that Mom was God’s reward to him for remaining pure before marriage. He was always too embarrassed to tell it to her like that, and she would have been too embarrassed to hear it.)
And even as my dad approached his hour, right to the end, my parents reaped the harvest of fidelity to God and to one another they had planted sixty-one years earlier: An hour before Dad died, Mother was at his side, spooning broth from a bowl, nourishment less for the vessel of clay than for the soul and spirit of the vessel. This love of theirs defined the quality of their life. A love like theirs puts the sword to the notion that we can gauge the quality of our lives by a mortal measure. As I trudge through the valley of the shadow of Dad’s death, still within hearing distance of his life, I know that the spoonful of broth Dad sipped from Mom’s hand half-an-hour before he died was okay. But the quality of his life wasn’t in the soup.
The wedding party, December 21, 1953, Immanuel Baptist in El Paso, Texas.
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WORLD magazine published a version of this essay in July 2014.