An excerpt from Winter’s End: Dementia and Dying Well.
Are there really fates worse than death? Like most people, Dan Winter was uncertain. That is until he visited his father at a memory care unit in Lawrence, Kansas.
Dan’s father had been diagnosed with Alzheimer’s disease at the age of 70. Winton “Wint” Allen Winter Sr. survived for 13 years, spending his final days in 2013 at a specialized chronic care facility. Dan remembers sitting silently beside him. His dad, who had once exuberantly embraced life, was unable to speak, understand the simplest words, or make eye contact. He couldn’t respond to his name. He was incontinent of bowel and bladder. Wint, like many patients in the final stages of dementia, had even tragically lost the ability to smile.
Dan felt demoralized that his father’s formerly agile mind had wound completely down. There was not the slightest whiff of his silly humor, constant state of motion, sometimes irritating logic, or obsession with the Kansas Jayhawks basketball team. Gone were the man’s ambitions, yearnings, and capacity to love. To Dan, it seemed that the disease stripped his dad not only of individuality and personhood, but of his essential humanity.
Wint had been a successful entrepreneur, banker, and cattle rancher. He had faithfully served in the Kansas Senate, where he was known to be articulate, popular, but also sometimes harshly opinionated.
At the nursing facility, Dan looked at the withered man lying in bed and concluded, There was no him. It was lights out.
The philosopher Kwame Anthony Appiah calls such experiences “a special heartbreak that arises from the doubleness of someone’s being here but not here.” Author Katie Engelhart has recounted the true story of a group of older women who were sufficiently traumatized by their experiences witnessing family members and friends with dementing illnesses that they created a secret pact, in which “the first one who gets Alzheimer’s gets killed by the rest of us.”
Dan’s heart may have been broken, but he was enraged as he gazed at his father. He explained, “Had my dad been able to see himself, he would have been horrified. Had he been able to see his decimated state that day, I’m quite certain he would have been angrier than me.”
Dan arrived at the same conclusion as renowned filmmaker Luis Buñuel, who exclaimed, “Life without memory is no life at all.” Dan made a silent vow: he would never follow his father’s example and merely endure. Like Engelhart’s women and their suicide cabal, he vividly remembers thinking, If I am ever diagnosed with Alzheimer’s, I will endeavor to determine the manner and timing of my own death.
Several months later, Wint fell and fractured his hip. It was a bad break, and the family hesitantly agreed with the medical team’s recommendation that it be surgically repaired.
Dan arrived at the hospital just as the surgeon reported: “It was a very successful operation. We’re really proud of what we did.” Turning to Dan and his brother, the physician concluded, “Just make sure he never puts more than 30 percent of his body weight on the leg.”
While patently absurd to expect an individual with severe dementia to be capable of following such a dictate, the request turned out to be moot: Wint would never stand upright again. He would die three days later.
After the death, Dan looked around at his family and thought, We weren’t sorry that he died. We were glad he was gone.
When Dan recounted this anecdote, he said, “Of course, I couldn’t say that to just anybody because people would think I was a callous asshole. But we were relieved this ordeal was over. It was over for him and for us.”
Lewis Cohen is a psychiatrist and author of Winter’s End: Dementia and Dying Well.
