Sandra Day O’Connor, who was appointed as the nation’s first female Supreme Court justice in 1981, died in Phoenix, Arizona last Friday at the age of 93. She died from a respiratory illness, with complications from Alzheimer’s, the same illness that took over her life in 1990, when her husband, John, was diagnosed.
Sandra was unfortunately all too familiar with Alzheimer’s, seeing her mother, aunt, and husband experience the disease.
Former Justice O’Connor Retired from the Supreme Court to Care for her Husband
Sandra Day O’Connor made many sacrifices as an Alzheimer’s caregiver. In the early days of her husband’s illness, she would often take him to court with her because he could not be left alone, since he would wander. After 25 years on the Supreme Court, Justice O’Connor retired in 2006 to care for her husband full-time.
In the advanced stage of his disease, when he no longer recognized Sandra as his wife, John even developed a relationship with another woman. Sandra was very understanding and while he held the hand of the other woman, she would sit there and hold his other hand. Sandra stated, “How enforceable is the contract of marriage, when one does not remember the marriage?” She was relieved and even happy that her husband was relaxed, content, and comfortable, and selflessly, that’s what mattered to her the most.
Former Justice O’Connor was Hailed as a Strong Advocate for Alzheimer’s Patients and Caregivers
In remarks delivered before a Senate committee on aging in 2008, two years after she retired, she opened up about her experience as a caregiver and made recommendations to help other Alzheimer’s caregivers. According to Justice O’Connor, “Clearly, Alzheimer’s disease is a family disease. It may directly attack only one member of a family. But every member of that family feels the effects. Every member loses something.”
In her remarks to the Senate, Sandra recounted, “Eventually, formerly self-reliant, articulate and loving family members lose the ability to bathe, dress or eat without help … lose the ability to communicate … and fail to recognize the spouse or the children for whom they have cared so deeply for so many years.”
As an outspoken dementia caregiver, Justice O’Connor was appointed as the honorary chair of the Alzheimer’s Drug Discovery Foundation and served on the Alzheimer’s Study Group (ASG), a 2009 nonpartisan panel that developed a national plan to combat Alzheimer’s.
As a caregiver for her husband, Justice O’Connor appeared on an NPR call-in program where 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.”
Justice O’Connor issued this warning to Congress: “Our study shows that in the next 20 years, the numbers of people with Alzheimer’s will increase more than 50%. 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.”
“Ms. O’Connor played an important role in making Alzheimer’s the national priority it is today,” said Dr. Joanne Pike, the Alzheimer’s Association’s president and CEO, in a statement. “Driven by her experience of caring for her husband as he battled Alzheimer’s, she served as a member of the Alzheimer’s Study Group in 2009, ensuring caregivers and those living with dementia were represented. “Ms. O’Connor leaves behind a legacy as a transparent leader,” Pike continued, “using her voice to inspire action and change for all those impacted by Alzheimer’s and all other dementia.”
Sandra’s husband died soon after she spoke to Congress, at the age of 79.
Sandra Day O’Connor’s Family Announces that She Has Alzheimer’s
Nearly ten years after she spoke to congress, in October 2018, Sandra’s family released a letter announcing that she had been diagnosed with Alzheimer’s and that she was “no longer able to participate in public life.” Sandra’s symptoms began years before. In September 2013, for instance, when she was due to give a lecture at the University of Colorado Law School, O’Connor turned to her friend and asked, “What am I speaking about?”
According to her son, Jay, when she was diagnosed, at first his mother didn’t want to believe it — her worst fear — given a family history of dementia. So, for a number of years, “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,” he said. 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,”
Couples with Alzheimer’s Could Be Valuable to Research
According to researchers, couples such as Sandra Day O’Connor and her husband, John, are a ripe area of research for Alzheimer’s scientists. Researchers believe couples are a promising area of research because they’re ideal subjects. They live together and are exposed to the same environment that could help separate the genetic aspect of Alzheimer’s from diet, pollution, and other factors. Couples are not related genetically either, which helps isolate the genetic component.
In 2010, a research team published a paper in the Journal of the American Geriatric Society that found when one partner had Alzheimer’s and the other took on the role of caregiver, the caregiver was 66 percent more likely to develop dementia in the next decade. Researchers were not able to say why it happened.
Spouses of Alzheimer’s patients who are caregivers bear a huge burden—what some call “caregiver stress syndrome.” Rates of depression are high among caregivers, and some researchers wonder if that is something that increases a caregiver’s own risk of developing Alzheimer’s.
Some people also wonder whether Alzheimer’s disease might be contagious. The scientific evidence summarized in this article says emphatically that Alzheimer’s disease is not contagious or transmissible, although this scientific article from the British Alzheimer’s Society, discussing certain types of surgery and blood transfusions, acknowledges that “[w]e still don’t know enough about how amyloid protein might be transmitted between people to be certain about any risk.”
Regardless, caregivers of those with Alzheimer’s (and everyone else for that matter) should always practice self-care and do what they can to stave off the disease. Some examples of things that can be done to reduce chances of developing Alzheimer’s and other forms of dementia are described in my article, “How to Stave Off Dementia.”
Do You or a Loved One Have Alzheimer’s? — The Time to Plan Is Now!
Persons with Alzheimer’s and other forms of dementia and their families face special legal and financial needs; if dementia affects you or a loved one, please reach out to make an appointment:
Northern Virginia Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
District of Columbia Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
