Alzheimer’s disease doesn’t discriminate. No matter your fame, no matter how deep your pockets, it slowly, but methodically ravages minds. It’s an unwelcome visitor. Few understand this more than the family of retired Supreme Court Justice Sandra Day O’Connor, the first woman to sit on the court.
During O’Connor’s life, she has become all too familiar with the disease. By last October, when publicly revealing her diagnosis of “dementia, probably Alzheimer’s” (those were the doctor’s words), the disease had already taken her mother, aunt and husband.
Her youngest son, Jay, a tech executive in San Francisco, spoke with me about how his mother provided Alzheimer’s caregiving for his father John while she was on the Supreme Court and how that led her to retire at 75, in 2006. He also talked about how his mother, now 88, is living with her own diagnosis. He and his brothers also provided recollections in the O’Connor biography out today, First, by Evan Thomas.
In these conversations, an intimate picture emerges of one of the country’s most powerful women navigating work/life balance on a grand scale — the twin pressures of a husband progressively losing cognitive function while she carries out her unique responsibilities as one of nine justices on the Supreme Court.
The job and family circumstances may differ, but similar scenes are playing out privately in millions of homes across America.
O’Connor disclosed her diagnosis last October in an open letter to friends and her fellow Americans years after she got the news. She wrote: “Some time ago, doctors diagnosed me with the beginning stages of dementia, probably Alzheimer’s disease. As this condition has progressed, I am no longer able to participate in public life.”
For her family, it was never a question of whether to go public. “We knew at some point it would become known that she was suffering from dementia and it seemed like a good idea to get ahead of this so some good can come out of this,” Jay O’Connor told me.
What O’Connor chose not to reference in her letter were her years as an Alzheimer’s caregiver for her beloved husband, where she had a front row seat to a progressive disease with no cure. O’Connor told Thomas that her decision to retire from the Supreme Court, largely to focus on her husband’s needs, was “the biggest mistake, the dumbest thing I ever did.”
O’Connor and the National Alzheimer’s Report
The unforgiving demands of caring for a husband who diminishes by the day would inform O’Connor’s service as honorary chair of the Alzheimer’s Drug Discovery Foundation and on the Alzheimer’s Study Group (ASG), the 2009 nonpartisan panel that developed a national plan to combat what the report said “poses a grave and growing challenge to our nation.”
The day that report was released, 10 years ago this month, O’Connor issued this warning in Congressional testimony: “Our study shows that in the next 20 years, the numbers of people with Alzheimer’s will increase more than 50 percent. And without some basic action in this country, ultimately one in two people over 80 are going to have this disease. That’s too many.”
What she couldn’t have known as she spoke those words was that she would soon be among those statistics.
Caregiver for Husband John O’Connor With Alzheimer’s
For John O’Connor, a partner at a prestigious Washington, D.C. law firm, the early signs of memory loss didn’t escape the people who saw him every day.
“Linda Neary, his secretary, began wondering why he was asking her to copy the same documents twice, “ Thomas writes. And by 2000, Thomas reports, O’Connor went to Georgetown Hospital to see a neurologist, without telling his wife, and got the official word that he had Alzheimer’s.”
As O’Connor’s condition worsened over the next few years, Thomas writes, his neurologist told his wife that her husband was “having trouble writing down his thoughts. He can’t remember his words.”
The O’Connors then sold their home and moved to a condominium “so someone would be at the front desk,” Jay O’Connor told me, “to look out for my dad and make sure if he starts to wander out of the building, they could grab him.”
During certain hours of the day when his father wasn’t in his care program, Jay said, his mom would bring him to her spacious chambers at the Supreme Court.
“He would come and sit in her big office,” Jay explained. “She had a couch. She would do her work and he just sat there and looked through the newspaper. If he did wander off, it would be harmless, because there always would be a guard nearby.”
Leaving the Supreme Court
For Justice O’Connor, there were two tipping points in her husband’s Alzheimer’s journey.
The first came when she concluded she could no longer stay on the court. It was both a huge personal decision and, as the decisive fifth vote on the high court in controversial decisions, O’Connor was mindful of the ramifications for the country.
But it was a decision O’Connor felt she owed her husband. Thomas writes that she had told a friend, “John gave up his position in Phoenix to come with me [to Washington] so now I am giving up my job to take care of him.”
But in the months following her announced intention to step down, there was, in Jay’s words, “a strange turn of events.” Chief Justice William Rehnquist died, John Roberts was confirmed as his successor and Harriet Miers, nominated to be O’Connor’s successor, withdrew after some controversy. That would keep O’Connor on the court for another seven months until the following February when her eventual successor, Samuel Alito, was sworn in.
Thomas writes: “It was tragic because within six months of her leaving the court, he could barely recognize her.”
The Second Tipping Point
But sadly, with her husband’s condition deteriorating, it would be only months later that the newly retired justice would have to make the most wrenching decision of all, which was the second tipping point.
Every Alzheimer’s family has a moment when the spouse or children can no longer adequately care for the person with the disease. For Justice O’Connor, that moment came after she and her husband took a cruise off Turkey that Jay’s older brother, Scott, told Thomas was “a disaster,” adding, “they were afraid dad would jump overboard.”
The newly retired Justice had long resisted moving her husband to a special facility. But when she got back to Washington, according to the Thomas book, Scott said she cried and told him, “I’m ready. Show me what you’ve researched.” The O’Connors moved John O’Connor to his new home, an Alzheimer’s care facility in Phoenix.
While there, he formed an attachment to another woman. The newly retired Justice O’Connor, Thomas writes, “would come in and find her husband holding hands with this other woman, and with her characteristic strength she would sit down and take her husband’s other hand.”
Justice O’Connor on Being an Alzheimer’s Caregiver
Just months before John O’Connor died in 2009, Justice O’Connor appeared on an NPR call-in program. It was the day the Alzheimer’s Study Group report came out. There, she spoke candidly about the caregiving challenges of having a spouse with Alzheimer’s.
“Someone who is truly afflicted with Alzheimer’s needs somebody with them all the time. There are occasionally gaps as long as an hour after my husband was brought home from a day care facility for people with Alzheimer’s before I could get home. And during that hour, he started wandering,” she said. “And that was frightening for me and I’m sure for him, too, when he realized he didn’t know where he belonged or how to get back. It’s like caring for a small child. You can’t leave them unattended.”
In his book, Thomas traces a series of public moments for Justice O’Connor — her forgetfulness or odd behavior — that, looking back could have been a roadmap to her eventual dementia diagnosis.
Early Signs of O’Connor’s Dementia
Perhaps the most telling was from September, 2013 when she was due to give a lecture at the University of Colorado Law School. Backstage, O’Connor turned to her friend and asked, “What am I speaking about?” Then she asked two friends to join her onstage and, Thomas writes, “they prompted her through a labored conversation.” One of her friends said, She knew what was happening, but she was not ready to confront the reality.’”
Sandra Day O’Connor grew up on the Lazy B cattle ranch in Arizona, knowing there were no sure bets in life. Prolonged drought meant dead cattle and fears of selling off the ranch. Later, while on the Supreme Court, O’Connor was successfully treated for breast cancer. And during her life, she has watched some of the people closest to her — her mother, aunt and her husband — transformed into shells by Alzheimer’s. Now, this most unwelcome visitor has her in its grip.
Jay O’Connor understands that short of a miraculous treatment or cure, there is no way out.
“It’s this dreaded disease that she helped my dad through all these years, watched it just completely destroy him. And now she’s got the exact same diagnosis,” he told me.
How O’Connor Responded to Her Diagnosis
At first, Jay says, his mother didn’t want to believe it — her worst fear — given a family history of dementia. So, for a number of years, he adds, “she just tried to power through. She’s a woman who has been able to overcome so many powerful obstacles in her life and career. And it turns out that dementia and Alzheimer’s is just the obstacle you can’t overcome.”
These days, Jay O’Connor and his brothers, like others with a family history of Alzheimer’s, wait and wonder if they, too, will be visited by the unwelcome guest or be spared.
“Our hope is that we won’t be afflicted with the condition ourselves, but our greater hope is that a cure is found for Alzheimer’s so nobody has to experience it,” says Jay. “You know, life goes on, so you just need to plow ahead.”
Next Avenue Editors Also Recommend:
- Glen Campbell’s Farewell Tour, With Alzheimer’s
- Who Cares for Alzheimer’s Caregivers?
- How This Wife Unlocked Her Husband’s Dementia
Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. What story will you help make possible?