OAKLAND, Calif. -- Decorated by Gen. Dwight D. Eisenhower for bravery at the Battle of the Bulge, William Knox Roberts was a fighter. A surgery for liver cancer in 1999 had left him in the clear, but in February, he developed lung congestion that wouldn't clear.
X-rays revealed chronic pulmonary disease -- and a mass on his liver. In July, Kaiser placed him under hospice care.
He confided in his 59-year-old son, Tom, that breathing was like being waterboarded, and he grew more and more apprehensive about the fate of Tom's sister, Marian, who had needed round-the-clock care since a brain injury in 1987.
"He told me: 'You can't do it by yourself. You can't do it alone,' " recalled Tom, who had slept on an air mattress at the foot of his sister's bed for more than a quarter of a century.
The elder Roberts, now 88, had grown hard of hearing and become a bit paranoid. He slept with a gun under his pillow, Tom said, and would on some nights tromp midway down the stairs leading to the siblings' room and sit there for hours, armed, to "protect his daughter" from intruders.
On Aug. 17, however, he seemed in high spirits. He suggested a big dinner of prime rib and potatoes. Marian "loved it," Tom said. The following night, brother and sister turned in at 11 p.m.
At 4:30 a.m., Tom leapt up to the sound of back-to-back pops and stepped on something he initially thought to be a tooth. As he raised it to his face in the darkness, he saw a shell casing coated in ceiling plaster.
"I dropped it and dialed 911," he said.
His father had fired a fatal bullet into his 57-year-old daughter. Then he sat in an antique armchair and took his own life.
Three days later, Tom found a note in the pocket of his father's shirt. "Two more weeks could be torture," it read. "Every hour more is not nearly worth it. Thank all of you for your help, and sorry for any mess."
It made no mention of his plans for Marian.
"I never saw it coming," Tom said. "No one did."
Local media accounts of the murder-suicide were sparing but conveyed a certain sympathy. The father's love for Marian was not in question, a neighbor said, so he no doubt acted "out of mercy."
But in the disability rights community, the familiar narrative struck a nerve.
A red flag rises whenever a caregiver kills a son or daughter with disabilities. Such cases often involve minor children and parents who deem the young lives not worth living, or the burdens of care too great.
"We don't want to send the message that our lives are not worth living and someone else gets to decide whether we live or die," said Yomi Wrong, executive director of the nonprofit Center for Independent Living, which is helping to plan a media symposium on the topic at the University of California, Berkeley.
"People we are hearing from are saying, 'This is frightening.' This is not a reasonable reaction by a care provider under stress."
Meanwhile, research by Donna Cohen, a University of South Florida professor and leading expert on caregiver homicides, reveals that older victims are generally killed by men -- most often spouses -- who love them deeply but are suffering from depression and are sometimes acutely physically ill as well.
"We need to look closer to prevent them," said Cohen, who estimates that there are between 100 and 250 caregiver homicides each year. "My read of Marian's case is that this was not a mercy killing. This was a terminally ill, severely stressed father."
The easy acceptance of the mercy story line in brief coverage of Marian's death caused consternation.
Disability rights activist Corbett O'Toole responded with an experiment. She stripped one Roberts story of references to disability, replacing them with economic status. An ill and elderly father who had been helping support his unemployed daughter for 25 years, the rewrite went, was "really worried" about his inability to continue doing so. So he killed her and then turned the gun on himself.
"Of course we would never accept such a story at face value," said Susan Schweik, UC Berkeley associate dean of arts and humanities and a disability rights professor. "We would never let it rest there. We would have a different understanding of what had occurred, and mercy killing would never cross our minds."
The key question, she said, is "who are the people in this culture who are vulnerable to being thought better off dead and how do we protect them?"
On the sidelines of the conversation is Tom Roberts -- bereaved and broken and suddenly, painfully, facing an open-ended kind of life without the sister he adored.
Marian and Tom were among four siblings born in quick succession in Castro Valley. At age 6, Marian began collecting dolls from around the world, and that became her lifelong passion: Several hundred line a floor-to-ceiling glass case in the fanciful Oakland family home -- a wood-sided farmhouse that the elder Roberts jacked up to make room for a modern ranch-style structure underneath.
As a girl, Marian had learned to sew doll clothes, a skill that landed her a job at Whitey's Upholstery in Hawaii. Tom followed and launched a moving business with a friend, the pair donning Whitey's T-shirts as "uniforms."
Blond and just 5 feet tall, with an open smile, Marian led a carefree life in the upcountry town of Makawao. Tom, with a bushy red beard and playful gaze, was an avid scuba diver.
Then, on March 18, 1987, Marian fell down concrete steps that led to her shack's enclosed toilet. Though she got up and told a boyfriend she was fine, she had a seizure not long thereafter. She was airlifted home to her parents, and Tom came back too.
A bulky, brown hardcover book, "Rehabilitation of the Head Injured Adult," became the family bible.
They began a new kind of life -- working the daily crossword puzzle together and feeding the squirrels. If Marian had a cramp during the night, Tom was there to massage it. Each day, he helped her exercise on the floor mat and pedaler and stand in leg braces at a contraption that their father had rigged in the garage.
Severe dysphasia had left Marian's speech so slurred that Tom was "the only one who could understand her," he said. Worsening spasticity left her arms so curled that in recent years she no longer could use her "talking computer" to communicate. She could barely lift a cup to her lips, let alone move her own wheelchair.
"I was her motor," said Tom, whose beard has grayed but whose eyes retain their mischief.
Other than a year off to help a friend in Idaho, Tom was her primary caretaker. After he returned in late 2007 he never so much as took a weekend off. "It's what you do," he said. "It's the situation you're put into, and you respond."
The pair made regular visits to a hospital spasticity clinic and a Berkeley physical therapist, and Marian delighted in trips to the mall and to her favorite Mexican restaurant.
"She was still sharp as a tack. She was a blast," Tom said through tears, recalling his sister's fondness for puns, flamingos and her beloved San Francisco 49ers. "She was my bud."
Her constant refrain was "I'm trying as hard as I can." Yet her mood "swung up and swung down."
While watching a documentary about Jack Kevorkian this spring, she had asked Tom if he could devise an assisted suicide "setup" for her someday. He didn't think much of it, and learned only recently from a neighbor close to her father that Marian had asked him, "Could you kill me?"
"He said, 'No, I can't kill my daughter,' " Tom said, his voice cracking. "But he did."
Marian's blouses and shoes are still lined up neatly in the utility room that doubled as her closet. Tom plans to leave them right where they are, for now.
He was prepared to care for her for a lifetime, and breaks down easily and often when he speaks of her.
He struggles to balance his feelings over his dual losses. The lives of the disabled "are theirs," he said emphatically. "They don't belong to anyone else."
Still, he witnessed the mounting distress his father felt over Marian's future. "I believe it was the incorrect thing to do," he said, "but I kind of see where he was coming from."
A woodworker who was "suckin' sawdust" in his dad's cabinet shop by age 14, Tom perfected whimsical animal carvings while sitting at Marian's side. He is now curing cedar logs for future projects and plans to build a cabin in the woods, someplace, someday.
"It's something I always wanted to do," he said, "so I will."
He has reconnected with his brother in Lake Tahoe, whom he hadn't seen for eight years (brother and father didn't get along) and plans to do some backpacking with his 30-year-old nephew.
Initially, he vowed to sell the house and leave, but he quickly changed his mind.
"I live here," he said of the home filled with memories -- the pelt of a grizzly bear his father felled in Alaska, his collection of pristine arrowheads, the massive silken yew log he has long used for biceps curls and squats to keep his lean frame strong. (Its name is "yewey.")
Tom recently gave his beard a fierce trim and took a contracting job repairing the wooden exterior of a Castro Valley dental office owned by family friends.
"It's kind of good to be getting out and doing something for somebody else," he said.
Neighbors bring spaghetti and steak or drop by for a game of darts in the yard. All were stunned by the elder Roberts' actions.
"Everyone has their own feeling, but people don't jam me about it," Tom said. "That 'pop, pop,' I'll never forget it, as long as I live."
By Lee Romney
Los Angeles Times