O'Connor: The Pain of Alzheimer's

Sandra Day O'Connor, the trailblazing first woman Justice, sat down with me yesterday for a moving conversation about Alzheimer's Disease and how it has affected her life. It was the first time she's discussed the horrific disease from her perspective -- that of a caregiver to her husband, John, who has battled the disease 18 years.  You can watch the segment from Good Morning America HERE.

O'Connor has joined a national task force charged with creating a plan to, as she says, "overcome the mounting Alzheimer's crisis." She is calling on Congress to step in and make Alzheimer's funding a top priority -- pointing that the disease now affects 5.2 million people in our country and is expected to dramatically rise in the years to come.

"That's why I think it's important as a nation that we focus on it," she said in an interview at the Court. "I hope the Congress will focus on it and see what we can do, at the national level, to speed up some resolution of how we can provide better medications, better health care for people who suffer from it -- and some kind of economic help for those who need it to provide care for those who are suffering."

O'Connor spoke openly about her family's struggle over the last 18 years, after her husband was diagnosed with Alzheimer's. She had met John O'Connor when the two were students at Stanford Law School, and she was charmed by his Irish wit and storytelling. The couple married in 1952. Over the years, John O'Connor was his wife's biggest advocate and supporter, cheering her on as she demolished barriers previously erected in front of women to become an historic first -- lawyer, politician, Supreme Court justice.

O'Connor said she first had a sense something was wrong when John O'Connor, known for his  humor, suffered problems with his short-term memory.

He "couldn't remember punch lines to his jokes, and he loves to tell jokes," O'Connor said.

"It's so painful for someone you care about to see them disappear, in effect, before your eyes in every way, both mentally and physically. Very depressing," she said.

As her husband began to decline, O'Connor started taking him with her to work and on her travels. He often sat and read quietly in her chambers while she worked.

"That was at a time when he could still read. Of course, that fades, too," she said. "Reading was a great gift for many years for my husband. As long as he could do that, he could manage to get through the days rather well. But it’s no longer possible for him to read or understand, and so it makes the caregiving much more difficult."

O'Connor had always assumed she and John would retire and travel the world, playing golf and spending time with their grandchildren. But Alzheimer's changed that. She left the Court in 2005 to care for her husband. He now is in a facility in Arizona, and he is "not well," she said.

"Like all victims of the disease, it's very progressive," she said. "And it's progressed a long way with my dear husband."

I asked this woman -- a role model for millions of women for so many years, a person who overcame enormous sexism and the hurdles of her generation by refusing to give up -- if she had ever felt defeated by Alzheimer's.

"Well, we're not at the end of the road.  There just aren't any medications at present that can help my husband," she said. "He can't have his brain restored.

"And that's what some of the researchers are experimenting with today, ways to... make it possible for people to live longer and more successfully although afflicted with the disease.

"We don't know what that's going to produce.  But we can only hope and pray that the researchers have found something that will help and that drug companies will able to -- be enabled to market these eventually to people and that they'll get the relief," she said. "Right now, it isn't there."

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