Remembering Nancy Reagan’s Courageous Fight for Alzheimer’s Research

The news did not surprise her. In 1994, Nancy Reagan took her beloved Ronnie to the Mayo Clinic. The former president, her soul mate of more than 40 years, had been forgetting things, repeating himself, trying but failing to do the simplest things. When the doctors returned with their devastating verdict— Alzheimer’s, then a relatively new term—Nancy was already braced for the worst. “By the time you go in to get checked out,” a source close to the family said, “something has given you the idea that there is something very wrong.” Discovering what the enemy was did not make the toll the disease would take any easier to bear. In 1994, “nobody knew what to expect,” the insider recalled. “We didn’t know what questions to ask, what to talk about, what the future would be like.” Nancy did know one thing: The man who called her his “roommate” and wrote her love letters in their fifth decade of marriage was going to leave her—slowly, painfully, bit by bit.

So began what she called her husband’s “long goodbye,” which was, for her, ten years of exacting caregiving, hurried lunches with friends, ever-briefer phone calls to the outside world, hours spent with old love letters, and advocacy for research into the disease that was taking Ronnie from her. The story of her devotion was in a way grim and unrelieved but also tender and loving. The woman once mocked as a Lady Who Lunched showed more true grit than any cowboy Ronald Reagan ever played.

The former president himself had seen how difficult his descent would be, and as always, his first thoughts had been of Nancy. “Unfortunately, as Alzheimer’s disease progresses,” he wrote in his last letter to the country, “the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage.”

Nancy’s “faith and courage” were on display as she led the nation in mourning her husband, who died on June 5, 2004, at the age of 93. Under the Capitol Dome, she kissed his coffin. She stood there, a solitary figure, an 82-year-old woman who had lost the love of her life.

She never liked to be apart from him. In 1981, the night before she flew to England alone to attend the wedding of Prince Charles and Diana Spencer, Nancy wept at the thought of being away from Ronnie for a few days. At the White House, the first lady was portrayed in the media as a hard woman, a fashionista who plotted to fire her husband’s aides. The real insiders knew better; they understood she could be determined and even relentless but also emotionally fragile. She seemed to carry all her husband’s cares for him. “She never slept much; he did,” recalled a close friend. “He never worried about anything; she worried about everything.”

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But on June 11, 2004, a day of liturgy and ceremony before her husband’s final rest, she was determined to be stoic and serene. In the long, creeping darkness of his disease, he had slowly drifted away, even from her. Now she was bringing him back into the sunlit realm of symbol and legend. Not since Jacqueline Kennedy had a first lady better grasped her husband’s myth and worked with such craft and devotion to enlarge and enshrine it.

At the funeral, Nancy was determined not to lose control. Her face seemed frozen at times. Speaking in the National Cathedral, George H. W. Bush told a story about his old boss’s charm. Bush recounted how Reagan was once asked, “How did your visit go with Bishop Tutu?” The president responded, “So-so.” The heads of state and media bigwigs and Hollywood types roared. Nancy’s mask dissolved, and she chuckled softly, a bit ruefully. We all did, recalling for a moment when it was morning in America.

 

The marriage of Nancy and Ronald Reagan had been, in a way, a perfect union. It did not really have room for anyone else, including, for long stretches of time, their own children. Nancy once said that her life began when she met Ronald Reagan (at the age of 30, in 1951). Reagan had been jilted by his first wife and his movie career was fading when he found Nancy. She made him whole.

Alzheimer’s was an excruciating curse on the Reagans. “You know, you wouldn’t believe it; it’s worse than the assassination,” Mrs. Reagan told commentator Chris Matthews in 1997. She spoke of the “separation.” At the time, she was still sleeping in the same bed with a man who would awake, each day, a little less sure of who she was.

Reagan had always been a little forgetful of names and masked it with corny jokes. But in the early 1990s, Nancy knew something was wrong. In 1994, Reagan gave his last speech, at his 83rd birthday, before 2,500 people in Washington. He delivered his lines all right, but as the Reagans returned to their hotel suite, he hesitated and said, “Well, I have got to wait a minute. I am not quite sure where I am.”

Dr. John Hutton, Reagan’s personal physician, later told the New York Times that Mrs. Reagan “very quickly and simply said, ‘Now, Ronnie, your clothes are down at the end of this room, and you go down and you will find out where they are.’” Nancy turned to Dr. Hutton and said, “John, do you see what I mean?”

Then came the Mayo Clinic and the diagnosis of degenerative cognitive dementia, or Alzheimer’s disease. At moments, Reagan couldn’t remember having lived in the White House; then, for a while, he’d seem almost normal. He knew the time had come to go public. On November 5, 1994, he wrote in a still-strong hand, “I now begin the journey that will lead me into the sunset of my life.”

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For Nancy, the ordeal had begun. “Alzheimer’s is a disease, like any other disease—cancer, heart disease, whatever,” she told an audience in New York City in July 1995. But it is a “really very cruel disease, because for the caregiver,” she said, her eyes reddening and her voice breaking, “it’s a long goodbye.”

Nancy had begun to talk to an old friend, Princess Yasmin Aga Khan, daughter of movie star Rita Hayworth, who had received an Alzheimer’s diagnosis in 1981. The princess told Mrs. Reagan what to expect: the mood changes, what it would be like when your loved one can’t talk and doesn’t recognize you, how to care for someone who has grown incontinent, how to stimulate swallowing by patting the throat or touching the chin. Nancy was, “of course, devastated but very brave,” the princess said.

There was less and less time for travel and shopping, even for social chitchat on the phone. “We all said goodbye ten years ago, when he still knew who some of us were,” said Nancy Reynolds, a close family friend. “She took the responsibility for caring for what was left.” In those early years after the diagnosis, Reynolds called Nancy quite often. “But how many times can you say, ‘How’s the president doing?’” Reynolds said. “So I started writing notes and letters and sending an occasional book instead … It took the pressure off. She didn’t have to talk about how she was doing. She wasn’t doing well.”

There were doctors, nurses, and maids around the clock, but Nancy was always in charge. She tried to create a life for her husband that would offer a semblance of pleasure and purpose and preserve his dignity. Some old joys had to go. Reagan could no longer ride his favorite horse. Nancy asked his Secret Service man, John Barletta, to deliver the news. “I said, ‘I don’t think we should ride anymore,’” Barletta recalled. “By this time, there’s tears coming down his cheeks. And all he said, in his time of need, was, ‘It’s OK, John.’ I know he was trying to make me feel better.”

Nancy, who had never taken to the outdoor life, sold Reagan’s beloved Rancho del Cielo in 1998. No more brush cutting or posthole digging for the Gipper. He walked in the park or whacked golf balls at the Los Angeles Country Club. He was, as ever, polite and greeted everyone with a nod or a wave or a smile. And he was always beautifully dressed. “He looked terrific,” recalled conservative activist Craig Shirley, remembering a visit to the Reagans in 1996. “A blue blazer with gray slacks, and the creases could have split wood.”

Alzheimer’s patients are soothed by routine, and Nancy created one that seemed as normal as possible. She sent her husband to his office for several hours a day. He’d sign papers and look busy, though he mostly thumbed through picture books and the comics. Nancy’s own pleasures were few. During the O. J. Simpson trial, social chronicler Dominick Dunne gave her daily briefings at lunchtime on the machinations in and out of court. Friends began to notice her exhaustion. She looked rail thin. She was uncomplaining but “sad,” recalled Sheila Tate, a former aide to Mrs. Reagan.

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In their king-size bed at 668 St. Cloud Road in Bel Air, Reagan would still clasp her hand in the night as he dreamed, but she would worry. Her own children were distant from her. Young Ron, a film and TV producer living in Seattle, rarely visited, and daughter Patti had been writing biting fiction that thinly disguised her anger at her parents. After her father was found to have Alzheimer’s, Patti joined the fold, but reconciliation with her mother was not instantaneous or easy. Maureen, Reagan’s daughter from his first marriage, to actress Jane Wyman, was attentive to her father, visiting about twice a month and speaking out to increase public awareness of the ravages of Alzheimer’s. But by 2001, Maureen lay in a hospital, dying of cancer.

 

Nancy seemed alone. In 2001, as he turned 90, Reagan fell and broke his hip. Physically, he recovered. His body, as always, was a fountain of youth. His doctors said he had the bones and tissues of a 60- to 70-year-old. But when Reagan went home from the hospital after the hip operation, he never left the house again.

Nancy essentially cut off contact with outsiders. “It was a matter of dignity,” explained a person close to the family. “She didn’t want anyone to see him that way.” She stopped her twice-a-year trips to see friends in New York. She never wanted to be more than five minutes away from the house; she did not want her husband to die alone. After he broke his hip, “we really expected that that was it. We literally believed he had three months to live,” said the family insider. If she did venture out to lunch or dinner, she would soon excuse herself and say that she had to get back to her “Ronnie.”

The years passed, and a certain resignation set in. Her sadness, Sheila Tate noticed when Nancy occasionally touched base, seemed to have turned into acceptance. “There was less pain in her voice when she talked about him,” Tate said. Nancy was ready for her husband to die. After he became infirm and began to sleep in a hospital bed at home, he ceased to recognize even Nancy. “Every year, his eyes seemed to withdraw more,” said the family insider, who went on: “Nobody who has watched Alzheimer’s progress would think that it’s good to hang on no matter what. The disease just keeps up its relentless march. Reagan never would have wanted to have gone on like that. He wasn’t a Republican who thought that all life was life, no matter what. That wasn’t living.”

Nancy’s life was not altogether joyless and certainly not meaningless. She became close to her daughter Patti. Nancy put her considerable shrewdness and drive into the cause of Alzheimer’s research. Despite a penchant for astrology, Nancy had always had an intellectual side. As a girl, Nancy admired her stepfather, Loyal Davis, a brain surgeon.

Still, she was stepping into a controversial area. The Republican right was dead set against using embryonic tissues for stem-cell research, and President George W. Bush had ordered strict limits. In Washington to accept an award in 2003, Nancy took President Bush’s chief of staff, Andy Card, aside at a dinner party and pressed him for a change of heart by the administration. Card was heard assuring her, “I will do that, Nancy.”

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When the end finally came, Nancy was there. At the last moment, Patti Davis said, “he opened his eyes, and he looked at Nancy for a good minute. 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.’”

Nancy braced herself for the celebration. When her husband’s coffin was placed in the Capitol Rotunda to lie in state for two days (more than 100,000 people went to see it), she wobbled slightly as Vice President Dick Cheney escorted her. She looked stricken, but she recovered. Sitting in the front pew at the National Cathedral, she held Patti’s hand from time to time but mostly stared straight ahead.

Aboard Air Force One, she flew with her husband westward for the last time. In the slanted light of early evening, the hearse bearing the president rose up the mountainside. The Reagan Library overlooks the Santa Susana Mountains, where, as a movie actor long ago, Reagan had performed in westerns. The soldiers and sailors carefully folded the American flag her husband had honored and handed it to her. She held Old Glory close to her heart and put her head on the coffin. Finally, she began to cry. Her family gathered around her; in that moment, at least, she no longer seemed so alone. That night, when Nancy and her children returned home to Bel Air, the house was empty and dark. The family talked into the night, until Nancy fell into a deep sleep.

She did not wake up for more than 12 hours. The family had C-Span tapes of the Washington and the Simi Valley events to watch, and then, for Nancy, there was a new grief to endure in a house without Ronnie.

“Now is the hard part, obviously,” said a family insider. “We all knew that last scene at the casket was going to come. That was really the beginning of her pain. She’s in that house all by herself.” Her memories—and the cause of stem-cell research—would have to sustain her. For her, the lingering images were the crowds on her husband’s final journey, the ordinary Americans who lined the roads on two coasts, saluting and waving.

“They buoyed Nancy,” the insider said. “They gave her the strength to keep going.”

 

EDITOR’S NOTE: After her husband’s death, Nancy Reagan intensified her advocacy for the patients and caregivers grappling with Alzheimer’s disease. She raised millions of dollars for research. Thanks to her intervention, President George W. Bush stepped back from a total ban on federal funding for stem-cell research. She also successfully lobbied members of Congress to prevent legislation that would have blocked state-funded stem-cell research. She stayed faithful to the memory of her husband. Her daughter Patti wrote in Time that as her mother neared the end of her life, “I remember how her eyes drifted toward the sky when she spoke about wanting to be with my father again.” On March 6, 2016, Nancy Reagan died at the age of 94.

 

from Reader's Digest http://ift.tt/206Qrwl