Holding out his hand, my 85-year old father beseeched me, “Am I still the same person I was before?” It was a farmer’s hand, weathered and rough from a long life of physical work, but his long, tapered fingers were just like mine.
In the week before, my dad had been told he would be moving into the health-care wing of his retirement community. After two and a half years in his assisted-living apartment, his mental and physical health declined. He came to breakfast dressed in multiple shirts. He wanted to leave the facility at night to look for my deceased mother, and one evening, he wandered into another resident’s private room.
The staff had told me and my sisters this decision was coming, and I could see he needed more care than assisted living could provide. But at that point, my father’s life changed dramatically, even before he moved into a nursing-home room.
He was given a security bracelet to wear that would sound off a noisy alarm if he attempted to leave the building. He was no longer allowed to sit outside the facility, lest he wander off. He was no longer allowed to sit alone in an enclosed patio because he might fall and break a hip.
My father’s mind was fuzzy, and his understanding wavered. But he knew something had changed. He knew people were treating him differently.
My dad, Lloyd Schroeder, was born and raised in a rural Mennonite community in south central Kansas. He was drafted at age 18 during World War II and served in Civilian Public Service (an alternative to military service) in conservation camps in Colorado, South Dakota and Montana. When he came back home, his mother met him with tears and relief in her eyes. His father, increasingly disabled by his alcoholism, waved a hand over the farm to indicate my father was now in charge.
Back in his home community, he dated and married my mother, and they moved to their own farm, where they would spend the next 56½ years. They raised four children, a boy and three girls. The farm produced wheat, milo and soybeans, a poultry operation and, later, Christmas trees. Both my mom and dad contributed considerable time and energy as church and community volunteers.
From an early age, I remember them laughing and embracing. Theirs was a deep and powerful love that endured through the years.
Just after the New Year in 2007, my 79-year-old mom was told by her doctor that malignant melanoma had spread to her lungs and liver and she had only a short time to live. Although obviously jolted, my dad proposed two goals in his calm and thoughtful manner. First, we would get mom to live to her birthday on May 22, and second, we would try to get her to live to Christmas of that year. Neither hope was fulfilled. Ten days later, my mother died.
Like many aging couples, my parents had increasingly relied on each other to make up for the other’s limitations. Without my mother to do things made impossible by his macular degeneration, my father moved off the farm to a nearby retirement community.
“The progress of medicine and public health has been an incredible boon—people get to live longer, healthier, more productive lives than ever before,” writes Atul Gawande in his book Being Mortal: Medicine and What Matters in the End. But even for those who manage to avoid major calamities, eventually mental and physical losses accumulate. “As fewer of us are struck dead out of the blue, most of us will spend significant periods of our lives too reduced and debilitated to live independently,” he writes.
A fog seemed to settle around my dad after my mom died; he was easily confused and seemed lost in thought. He was able to live in an “independent” apartment with support and extra services, but a host of chronic physical problems prompted a move to assisted living 17 months later.
Nevertheless, he seemed determined to start a new chapter in his life in those five years. He jumped into the myriad of activities and programs at his church-related retirement community. His gentle demeanor and sly sense of humor endeared him to staff. He found a comforting “tribe” in the companionship of fellow widows and widowers.
Even when his physical and cognitive struggles mounted, his flashes of humor broke through. Once, when an aide was helping him bathe, she noticed him shivering and asked if he was freezing. “No,” he said, “I’m a Schroeder.” (Friesen, pronounced free’-zun, was a common surname to him.)
No one ultimately survives dementia or Alzheimer’s or other cognitive impairments of old age. No one comes out of it to tell everyone else what it was really like. For my dad, dementia was intermittent at first. Clarity would come and go. More than once, he said that he knew something was wrong but didn’t know what it was.
The zig-zags of my father’s condition took a sharp drop down after he moved to full nursing care. He bemoaned the unfairness of making “one mistake” that forced his move. He spoke of being “committed” and “caged.” Several months later, he started taking morphine for pain from a fall and earlier compression fractures. His confusion increased. He lost weight; his breathing became labored. His thin skin tightened over his high cheekbones. He didn’t always know who I was.
Several times in those last months he believed that my mother had died just days before, instead of years. “Marlene just died,” he told me and my sisters. “I don’t know how I am going to make it.”
On Christmas morning of 2012, he seemed more clearheaded than he had in months. He greeted Wynn, my husband, by name and asked him questions. But his mood was depressed. “I’m in a miserable mess and I don’t know what to do,” he said. “I want my life back.” In the following three months until he died, his eyes were glazed over, and he spoke only in fragmented words.
I do not believe incontinence or not being able to feed yourself or sitting slumped in your wheelchair is inherently undignified. I do believe these losses, along with losing your mind and your wife and eldest son and so much else that you treasured in life, is a burden of almost unconscionable weight.
“Our ultimate goal, after all, is not a good death but a good life to the very end,” writes Gawande in Being Mortal. In redefining the priorities of caring for people who face their mortality through terminal illness and old age, he recommends we ask, What is most important to you?
For people like my father, there are more questions than answers right now. Perhaps knowing that will point the way to a better direction.
Ardie S. Goering lives in Kansas and New Mexico and attends the Bethel College Mennonite Church (North Newton) while in Kansas.