The 'real' Reagan

In his new book, My Father at 100, Ron Reagan Jr. says his father showed signs of Alzheimer's disease while occupying the Oval Office. Older brother Michael Reagan calls that claim bunk – an insulting attempt to rewrite history by a liberal son embarrassed of his conservative father's accomplishments. For her part, former first daughter Patti Davis has begged off the brewing family feud, saying only that "it is unfortunate that this subject was introduced at this time."

Although Alzheimer's patients typically show signs of mental decline years before they are diagnosed, most of President Ronald Reagan's associates back Michael's version of events. Figures ranging from former President George H.W. Bush to journalist Barbara Walters and presidential historian Douglas Brinkley have rushed to assure us that they saw no evidence of dementia in the sitting president. Many who worked with Reagan were as surprised as the rest of America when the 83-year-old former president released a handwritten letter announcing his diagnosis.

The ranks of those diagnosed with Alzheimer's have exploded since Reagan's 1994 announcement. In 1993, the U.S. Centers for Disease Control and Prevention counted 16,754 Alzheimer's-related deaths. In 2007, there were 74,632, and the CDC ranked the disease as America's sixth-leading killer. An estimated 5.1 million Americans over 65 have the disease today; that number will rise to nearly 8 million by 2030, after the youngest baby boomers turn 65.

With so many Americans affected by Alzheimer's, you would think our view of its sufferers would have matured since Reagan's supposedly stigma-shattering revelation. Yet here we are, nearly two decades hence, still viewing Alzheimer's patients through a Jekyll-and-Hyde lens. Terrified of dementia and its victims, we divide our memories of Alzheimer's patients into rigid categories of before and after, regarding the pre-dementia person as the "real" one and the other as an almost subhuman imposter.

It is true that Alzheimer's induces disturbing personality changes in many of its sufferers. And it's legitimate for Americans to want to know if Reagan had Alzheimer's in office. The fact that so many of his doctors and associates say he did not suggests that Michael's view is closer to the mark than Ron's. As someone who watched her father battle this disease for more than a dozen years, I know how tempting it is to scour your pre-diagnosis memories and attribute every puzzling thing your loved one ever said or did to Alzheimer's.

Yet even as I recognize the speculative nature of Ron Reagan's claims, the furor over them smacks of something more than a partisan clash. The uproar appears driven by the same assumptions that led pundits to treat President Reagan's death in 2004 as a mere formality, since dementia had killed the "real" Reagan long ago.

At the time, as I read Richard Roeper of the Chicago Sun-Times declaring that the former president had been "alive in body, but his spirit was gone," the Boston Globe's Ellen Goodman asserting that Reagan had suffered from a "disease that kills the self" and the Minneapolis Star-Tribune's Doug Grow claiming that Reagan had lost "everything from memory to dignity," the journalist in me knew what they were saying. But the daughter of a living, breathing, still very spirited dementia patient recoiled.

Who were they – who are any of us – to declare that a fellow human person has lost his spirit or self? How can we shepherd Alzheimer's patients through their final years with dignity if we presume that dignity is already lost? Is it any wonder caregivers for the demented feel isolated and undervalued in a culture that considers the objects of their devotion better off dead?

Reagan's letter to the American people ended with a poetic allusion to "the journey that will lead me into the sunset of my life." Yet our 40th president did not ride off into a Technicolor sunset. He lived another decade with dementia, suffering great losses punctuated by moments of great grace. One such moment came the afternoon he died, when he awoke for the first time in days and looked directly at his wife. His daughter later wrote that Reagan's eyes were "clear, and blue, and full of love.... He saw her, there was no doubt in my mind. It was as if his soul was saying, 'Hey, I was never really affected by all this.' "

A similar scene unfolded at my own father's deathbed. Shrouded in the fog of end-stage Alzheimer's and what had appeared to be a coma, he opened his eyes shortly before he died and reached out with one final bolt of determination to embrace my mother. That moment was real, as real as any in his life. And the man behind it was the same one I always had loved – one who was with us, body and soul, to the end.