Five years after U.S. Sen. Mark Warner's mother died of Alzheimer's, he is still haunted by what he might have done differently for her — if only he had known her wishes.
When the disease first took hold of Marjorie Warner in about 2000, her son was already a wealthy, self-made businessman, on his way to being elected Virginia's governor the following year. He prided himself on being a take-charge executive who could solve tough problems.
But after his mother was stricken, none of his money or experience really mattered.
It wasn't that Alzheimer's, which slowly destroys a person's memories and cognitive abilities, was incurable. It wasn't that private nursing care is pricey - his family had access to the best health care available.
What gnawed at the senator then — and still does today — is that he, his parents and his sister never had what he calls "the conversation" before his mother became too ill in the waning years of her life.
The warning signs were there. Her own parents had died from the disease.
Still, despite nagging worries about what was to come, they never had that difficult but necessary conversation about how she wanted to approach the last years of her life. How aggressive should her doctors be in trying to extend her life? Would she want to be put on a feeding tube? Nothing that would have helped guide them when decisions had to be made about her advanced care.
"I think she was always afraid of getting Alzheimer's. But there was never a question of 'When do you let go?' 'How many extraordinary additional actions do you take?' " Warner said. "She came up from that generation of having that fear of being put in a nursing home. I think a lot of people did."
His lingering frustration is fueling an effort to pass legislation that would launch a national campaign to encourage people to set up advanced-care plans. His bill also would establish a new Medicare benefit to cover the cost of professional counseling with health care professionals about long-term care planning.
Two years ago, Warner and Sen. Johnny Isakson, a Georgia Republican, introduced similar legislation that went nowhere. In the coming weeks, he and Isakson will try again, introducing a new care-planning bill.
Warner seldom talks at length about his family. But he has spoken in more detail about his mother's disease, hoping that his family's experience will help others see the importance of his legislation.
"Everybody has got a personal story," Warner said in a recent interview. "My story is my mom. For 11 years she had Alzheimer's, and nine of those years, she couldn't speak."
The Warners, who lived in the Connecticut city of Vernon, northeast of Hartford, were a close-knit family, The senator describes his mom as a 1960s housewife, who in a later era would have had a professional career. His father, now retired, worked in the insurance industry.
His mother's influence on him was immense.
He credits her with sparking his love of reading, and his sense of organization. He was the first in his family to graduate from college, and he later earned a law degree from Harvard University.
Watching the disease "chip away at her" was particularly hard, Warner said, because — like him — she was an energetic, social person. "She loved people."
After her diagnosis, Warner's father, Robert, and sister, Lisa, stepped in to take care of her at home.
"My dad," Warner said, pausing. "I think the hardest thing I can imagine is what he and my sister did for more than a decade. Taking care of her 24-7, with some additional help."
"Since we hadn't ever had the full conversation, near the end — particularly for my dad and my sister — it was harder to let go," he said. "There were times we were choosing things in intensive care near the end that I just personally felt she would have preferred..." Warner said, not completing his thought.
Marjorie Warner died Jan. 23, 2010, in her Connecticut home. She was 81.
The Warner family's experience is all too common, said Eric Sokol, a vice president of the Alzheimer's Foundation of America.
"Not everyone has an opportunity to set up their wishes," Sokol said. "It's an uncomfortable discussion. It's a topic not a lot of people want to deal with."
A key element of Warner's legislation would compensate doctors, nurses and other professionals to work as a team in discussing with a patient his or her long-term desires, explain how a disease would progress, and assist the patient in drafting a care plan. The advanced directive, which makes clear what the patient wanted, would be transferable to whatever state the patient might move to.
Warner said such planning also would involve clergy, should the patient want them included.
"This is something that would have been harder to talk about 10 or 15 years ago," he said.
Heeding his own advice, Warner, 60, and his wife, Lisa, have discussed care options for themselves, and the senator has prepared his own advanced directive.
He's not certain how his bill will fare this session. Past efforts have run into opposition because of the costs associated with providing the services. His new bill has not yet been reviewed by the Congressional Budget Office, so the cost estimates haven't been determined. Some also worry about negative associations that come with frank discussions about end-of-life care.
"There will always be opposition," Warner said. "This is about saying 'Do you really want to have a fourth time of resuscitation?' "
Warner has particular disdain for former Republican vice presidential candidate Sarah Palin, who falsely claimed that the 2009 Affordable Care Act included "death panels" that would decide patients' fate.
Warner said Palin's irresponsible comments scared people and set back serious consideration about the importance of long-term care planning.
"It was just awful," he said. "We're talking about expanding choices and not limiting anyone access to health care…. It's about having a conversation."