ElderWeb

Touched By the Net

Yahoo Internet Life, September 1999

By Mat Richtel

Easing the pain of long-term care One man, struck by a debilitating disease, uses his condition to help those in need Four years ago, Martin Bayne hardly looked like a man who soon would require medication just to get dressed, brush his teeth, and wave. He was 45, a highly successful businessman, and, though his hands would shake a bit now and then, in seemingly good health. But now the evidence of his Parkinson's disease is incontrovertible. Every morning he wakes up feeling as if he spent the night in a trash compactor, as he describes it, his body coursing with pain and clutched with near paralysis. Although this may sound overly dramatic, without his morning drug treatment each day, even the simple act of answering the telephone would cause Bayne agony. If the early onset of Parkinson's has been a tragedy for Bayne, the passion it has inspired may be a blessing for the rest of us. Rather than hang up his creative spirit, Bayne cashed out his insurance business and turned to the Internet. Now he uses his disease as the thrust behind a Web site devoted to the care of people who can't get through the day alone. To his Net followers, Bayne is known as "Mr. Long-Term Care," the driving force behind the site ADL Digest (the ADL in the site's name stands for Aging, Disability, and Long-Term Care, a play of sorts on the well-known acronym for Activities of Daily Living). The site, which explores both the political and personal aspects of caring for people who are sick, elderly, or disabled, started as a simple hobby. Now it features daily health updates, a newsletter, a library of newswire services (including the latest from Capitol Hill), and some 1,400 pages of information. Along the way, Bayne has interviewed such luminaries as former President Jimmy Carter and first lady Hillary Clinton, as well as numerous experts and authors. He writes and posts articles that seek not just to inform constituents but also to help those faced with the agonizing dilemma of how to care for a loved one. As a result, Bayne finds himself in a field with increasing personal stakes. The National Council on the Aging reportsthat 7 million Americans provide or manage care for a friend or relative aged 55 or older not living with them. That number will double within 15 years (and doesn't even include those who will be caring for a virtually unmeasurable younger population, whose diseases or disabilities may render them incompetent or unable to cope). As Bayne continues to develop the Web site, however, his own condition deteriorates. "I hurt. Every part of me hurts. I take little, itty-bitty steps," he says, referring to the hour and a half each morning before his medication kicks in. He can't drive his new car any longer; it takes half a minute to pick up a sock. He says he's grateful for the little things in life, like a tuna sandwich or a great cup of coffee. Bayne doesn't know how much longer he'll be able to sit down each morning at his computer, which he calls his command center, and run the site. A previous incarnation of his pages, called Mr. LTC, was taken down a few months ago (owing to a failed partnership with another site), and the new version is being slowly reposted. The good news is that Bayne won't have to do it alone: He has successfully teamed up with Karen Stevenson Brown, who in 1994 started a then-modest site called ElderWeb. Today, ElderWeb, which gets tens of thousands of hits a month, provides a list of national organizations (such as the Alzheimer's Association and National Institutes of Health) to help those in need, as well as health news and the latest studies on aging. But arguably the most valuable aspect of the site is its personal component. It offers copious resources on understanding and choosing how to care for a loved one who has reached the sunset stage of life, and offers help in steering clear of overly expensive or inadequate providers. These resources are broken down by state and region, and include articles on Home & Day Care, Hospice Programs, Fraud & Abuse, and Shared Housing. Brown, who spent nine years as the chief financial officer of a nursing-home chain, says that long-term care is never easy. "These are very traumatic, very expensive, life-changing decisions," Brown says. "It's a very, very important topic." And in her case, long-term housing for the elderly has hit close to home; she helped find assistance for her Aunt Margaret, who is in her late 80s. "Even with my background in long-term care," Brown says, "it was mind-boggling.