Life Lessons From Dad: Caring for an Aging Parent
By DAVE SHIFLETT
Article Originally Appears in the Wall Street Journal
My father was born and died at home. Nearly 91 years separated those two days, as did a lifetime of significant experiences, including one Great Depression, one World War, one wife, three children, and one year at my house, where he, accompanied by my mother, went through hospice during his struggle with dementia.
Our family’s experience was hardly unique. Around 5 million Americans suffer from dementia of some type (Alzheimer’s disease is the most prominent) and up to half of Americans over the age of 85 are afflicted. As our population ages, tens of millions of Americans will be called on to care for stricken parents. Over 15 million nonprofessionals are estimated to provide Alzheimer’s care alone.
What can families expect? Like all extreme experiences, caring for Dad changed our lives. Dementia is a terrible disease that robs its victims of their memories, their good nature and much of their dignity. Children of suffering parents will see many things they wish they hadn’t, and they may learn things about themselves that aren’t always flattering.
But that’s not the whole story. Even in the sadness of hopeless decline, my parents—members in good standing of the Greatest Generation—had a few things to teach their baby-boomer offspring about toughness, perseverance, quality of life and, especially, love. We were reminded, vividly, that we are often at our best when life is at its worst.
Ronald C. Shiflett—Ron to most everybody—was born June 17, 1923, in a row house in Richmond, Va. He rarely talked about his early years, though as he grew older Dad would recall his World War II experiences as a navigator on a Naval Air Corps troop transport, ferrying soldiers from San Francisco to Hawaii to Guam. “All that water,” he’d say of the vast Pacific. He also told stories about seeing fighter ace Pappy Boyington throwing back drinks at the Top of the Mark bar in San Francisco. Those were among the last memories to leave him.
As a father, Dad was definitely old-school. He wore the pants in the family—and the belt. During the hirsute 1960s, he seemed to take special delight in hauling me to the barbershop, where my ambitious locks were shorn with extreme malice. But he also had a good sense of humor, took us hunting and camping and hardly ever missed a day of work (he started his career in a gas station). Along with Mom, a public-school teacher, he sent me, my sister and my brother through college.
He was remarkably healthy and didn’t have a regular doctor until he was 85. Then his life, and ours, began a drastic change. Decline introduced itself in the form of delusions. One day Mom called from their home in Roanoke, Va., to say that she had found Dad standing down by the street, dressed in a suit. When asked what he was doing, he replied that he was waiting for the police to pick him up. Dad had come to believe he was guilty of various transgressions, which were all in his mind.
The dementia diagnosis came in April 2010, with physical ailments soon to follow. In May 2012, a bout of pneumonia kept him hospitalized for a week, and the dementia seemed to take over. The medical staff agreed that hospice—a program designed to provide comfort and support for patients with six months or less to live—was our best option.
After a quick huddle with family members, my wife and I said we would move Dad and Mom into our house, where Dad would receive hospice care. We had plenty of room—just under 3,000 square feet, including spare bedrooms (now that our sons had left) and a spare bathroom.
My wife works at a hospital and is gone much of the day, but I work from home. All of this would require some adjustments. I’d need to be available to help Dad go up and down stairs, but that didn’t seem like too much. In any event, this wasn’t going to be a long-term situation. We expected him to live another two or three months.
That was just over two years ago.
Lesson one from this adventure was that old folks, even when they’re frail, can be very tough. Dad, though cadaverous and confused, definitely didn’t get the memo that his end was near. Instead, he staged something of a comeback, part of which I attribute to “grub therapy”—a steady diet of everything that sends chills down the spine of the Surgeon General: lots of red meat, fried food (a crab cake a day keeps the Reaper away) and enough cookies to build a two-story chimney.
Meanwhile, Dad’s mental distress was somewhat ameliorated by various medications. The hospice nurses and workers—who checked his vital signs and helped clean him (and were paid through Medicare)—were impressed by his resurgence.
But life was difficult.
Dad was almost always cold and became deeply sensitive to being touched. He couldn’t shave or clean himself at any level. His mobility steadily declined, and his sense of humor faded. He couldn’t be left alone for more than a minute before crying out, “What am I supposed to do?” Dementia also destroyed his short-term memory, so he might ask the same question five times within a minute. If Mom went out for a few hours, he could easily ask 100 times when she would return. It was as if he were being dragged back into a state of infancy. My wife and I sometimes felt our once-spacious house had suddenly become very small.
All of which produced mixed feelings—sadness and exasperation, plus guilt for feeling exasperated, especially when considering everything Dad and Mom had done for us. Perhaps we suffered from Gratitude Deficit Disorder, if there is such a thing (if not, let’s hope the medical and pharmaceutical industries get cracking on this issue). We kept stiff upper lips, but those lips often concealed grinding teeth, despite help from dedicated and sometimes angelic sitters, who came several times a week and were paid for by Mom. Without them, we might have been overwhelmed by Dad’s constant need for attention.
Mom bore the brunt of Dad’s decline with almost supernatural grace. During the early months she showered him daily, which from outside the bathroom could sound like a mugging in process. Dressing him wasn’t much more peaceful. As Dad became increasingly bewildered, she patiently responded to his questions about the most basic elements of life, such as eating breakfast. Every morning Dad would look at his bowl of cereal and ask, “What am I supposed to do with this?” To which she would calmly reply, “You must eat it to keep up your strength.” This was usually followed by an exhortation to drink his prune juice.
Which brings us to perhaps the most harrowing and widely feared aspect of caring for a stricken parent: poop—the palindrome that sends countless hearts palpitating, at least until you get a little experience under your belt. Everyone I’ve ever talked to about caring for parents has had a somewhat similar story. One morning I heard Dad crying from the upstairs bathroom. There is no pleasant way to describe what I discovered: He was standing in his own excrement, which was scattered widely about. Cleaning up was no picnic, especially when attending to his soiled body, which puts one in frightfully close contact with the apparatus instrumental to your existence.
Ronald kneels in front of his unit in the U.S. Naval Air Corps. Courtesy of the Shiflett Family As Dad’s flame flickered, ours burned brighter. As his life faded, it brought our lives closer together. The challenge of caring for him also made us stronger.
But, as in other sometimes sticky situations we encountered during Dad’s stay, this one revealed a previously unrecognized talent for adapting on the spot. As Dad apologized for “the mess” (which he always did in these situations, right up to the end), I said, coolly and out of nowhere, “You’re hanging in there.” It became my go-to phrase whenever he became frustrated and saddened by his decline.
Dad had some good moments. He especially liked looking up at the blue sky from my brother’s back porch and taking boat rides with my brother, and he warmed up when my sister came to visit. My mother’s presence brought him peace. And while there was no mistaking where this was heading, I never heard him express any fear of death. He would, however, deliver stinging commentary on his status, usually as I helped him descend the stairs. As we neared the bottom step, he would often say, “This is no way to live.”
To some younger members of the family, that was a self evident truth. We, of course, are all about “quality of life,”whose definition doesn’t include living in diapers (which are euphemistically referred to as “briefs”). More than once I told my wife I never wanted to find myself in Dad’s condition. “You know what to do,” I instructed my youngest son, only partly in jest. “A pillow over the face at dawn.”
My parents’ perspective was quite different: Life, no matter how hopeless, is to be lived to the final breath. Even when it reached the point where Mom had to feed Dad, she would worry if he didn’t eat what she thought was a sufficient amount. Dad, despite his grumbling, would try to exercise every day, even when he had to rely on his hated walker. His life had become a burden, but in their eyes that didn’t diminish its value.
Dad had one last surprise up his sleeve—he “graduated” from hospice care. After a year with us, he no longer seemed to be at death’s door: His vital signs were good, though climbing the stairs was still a supreme struggle. Mom found a nearby assisted-living facility where, soon after arrival, Dad was taken out of the hospice program after an evaluation determined that he might have more than six months to live. And the hospice people were right. He held on for almost another full year.
Dad lived mostly in a large recliner during that last year, and eventually the hospice workers returned. His long-term memory deserted him; he could no longer recall, even with prompting, Pappy Boyington and the Top of the Mark in San Francisco. He did recognize family members and could manage a sentence or two about the weather, though after 10 months or so at their new home, his mental age, according to a hospice calculation, was that of a 4-year-old.
By then I think most family members had made the transition from thinking of death as an adversary to thinking of death as a liberator. This too raised some conflicting feelings: You hate to wish death on your father, but you also hate to see him suffer. Death was his only way out.
Mom was probably the last to make this mental transition, but a week or so before the end she said she thought it was time for him to go. He had begun refusing to eat or drink, which the hospice nurses said was a sign his body was shutting down. The last time we trekked to the bathroom, I held Dad by both hands and walked backward toward our target. His stride was about 3 inches. We didn’t make it in time.
“I’m sorry,” he said.
“You’re hanging in there.”
Dad died two days later, in his bed, surrounded by family. As the day progressed, he turned waxen and slightly blue. His mouth was constantly agape as he struggled to breathe, and at the end we told Mom that she probably shouldn’t look too closely. This was May 5, less than a month before their 66th wedding anniversary.
His service, which we held in my brother’s side yard, was a nice antidote to the sting of death. The Rev. Robert Bluford, one of Dad’s oldest friends and a bomber pilot during the war, read the standard Psalms to a crowd that was thin on churchgoers but stretched all the way from Richmond to San Francisco, where my oldest son watched the proceedings via Skype.
A friend sang “Over The Rainbow” (Dr. Bluford was in his early 20s when the song came out in 1939) and “My Beautiful Friend,” which underscored one of the most important lessons we learned from this experience: Never take friends for granted. Among our most cherished memories are of friends who stood with us, whether by bringing over a meal, letting us use a second home to get away for a few days or simply asking how things were going.
A hospice nurse told me, early on, that lots of children won’t move a stricken parent into their homes, opting instead for a facility such as a nursing home. How would I advise others who are facing this situation? For our family, bringing Dad home was the right thing to do. When he came out of the hospital, he was so weak and disoriented that putting him into an unfamiliar setting might have finished him off. I also think that caring for Dad made us better people.
As Dad’s flame flickered, ours burned brighter. As his life faded, it brought our lives closer together. The challenge of caring for him also made us stronger. We hung in there. None of this was easy or pretty, and while it was happening, it was easy to wish that we were somewhere else. But if we hadn’t done what we did, I know that we would regret that decision today.
To be sure, we had the room and the wherewithal to care for Dad. If he had been highly agitated or in acute pain, our decision might have been different. Judge not those who do not opt for home hospice. Our family walked a hard road. We watched Dad get stripped to the bone by a pitiless disease. Today, our house echoes with memories of his struggle—echoes that are a sad but strangely beautiful part of our song of life.