Thursday, August 16, 2007

"Loved Ones in Limbo" WSJ

"Waiting for the End: When Loved Ones Are Lost in Limbo" by Jeff Zaslow appears in today's Wall Street Journal, August 16, 2007, section D, page 1.

"Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states," Zaslow explains. "For their loved one, 'coping with the ambiguity creates a unique type of stress,''" according to a researcher. (See full article below.)

This exactly captures the situation I find myself in with my mother.

Wall Street Journal, Aug. 16, p. D1

Waiting for the End:When Loved OnesAre Lost in LimboAugust 16, 2007; Page D1
In the days after the Aug. 1 Minneapolis bridge collapse, families of the missing stood by the Mississippi River, waiting for word. Some 1,300 miles away, in Virginia Beach, Va., a widower named Matt Buckley found himself empathizing with their sadness and sense of uncertainty.
"I know that feeling of limbo," he says. "I can picture myself staring into that murky water, wondering and hoping. That's how I felt when I'd sit with my wife, wondering what was in her head: Are you there? Are you with us?"
Don Erickson, trapped in a Utah mine, in a photo held by his wife.
In 2004, Mr. Buckley's 44-year-old wife, Mary, had routine foot surgery and, because of an anesthesia mishap, suffered massive brain damage. She spent 30 months in a coma before dying last year.
The loved ones of those still missing in the Mississippi -- and in last week's Utah coal-mine collapse -- know they will likely have to deal with death. But first, like Mr. Buckley, they must deal with limbo, an increasingly common way station in the grief process today. It's a stage of mourning that researchers say deserves more attention.
"We're prolonging life, but we're also prolonging dying," says Mercedes Bern-Klug, an end-of-life researcher at the University of Iowa, who studies what she terms "ambiguous dying syndrome." Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states. For their loved ones, "coping with the ambiguity creates a unique type of stress," says Dr. Bern-Klug. "It's a form of angst we don't even have a name for in our culture."
Like families, corporations and nations are often unprepared for the repercussions of limbo. When ABC News anchor Bob Woodruff suffered a near-fatal head wound in Iraq, ABC had no firm contingency plan. Israel's former prime minister Ariel Sharon has been in a coma since January 2006, and Israel's government has moved on fitfully.
On the home front, the emotional toll of limbo can be excruciating. After Mary Buckley was left in a vegetative state with her eyes open, Mr. Buckley and his four sons endured false hopes offered by doctors, and their own feelings of helplessness and guilt. "I visited almost every day, but it was more out of a sense of duty than love," says Mr. Buckley. "The woman I married was gone."
During his wife's second year in a coma, Mr. Buckley developed romantic feelings for a widow who worked at a disability group. They proceeded slowly. She told him: "I feel like your mistress. You're still married." He replied: "I am and I'm not." By the time his wife died last October, Mr. Buckley had worked through his grief. "What I felt then was relief."

Join Jeff Zaslow and other readers in a discussion on limbo and grief.
At the bridge in Minneapolis, there was also relief last week when the bodies of Sadiya Sahal and her young daughter were finally found. Ms. Sahal came from Somalia, where in Muslim culture it is crucial for someone to be considered either alive or dead. Not having their bodies was "mental torment" for Ms. Sahal's loved ones, and they were grateful to have closure, says Omar Jamal, a family friend and spokesman.
In Saugus, Calif., John Colvin will be in limbo indefinitely. His wife remains severely cognitively impaired nine years after suffering a ruptured aneurysm in her brain. Now 61 years old and otherwise healthy, she may live for decades. Mr. Colvin, a religious man, vows not to seek sexual intimacy elsewhere. "I could have become a hard-core alcoholic," he says, but instead he found solace in a caregivers' support group.
The group's members remind each other not to be martyrs and to care for themselves first. They also give each other permission to joke about their ordeal, and to fantasize about an end to it. One of their mottos: "You can think terrible thoughts as long as you don't say them."
As medical advances continue to "deform the dying process," Dr. Bern-Klug predicts, families will have to deal with variations of limbo that are now unimaginable. It's territory that must be charted carefully, she says, as more of us share that experience of standing on a riverbank, waiting.
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