This week, let me pass along some of the more absorbing blogs and Web sites I’ve come across recently, other corners of the online world where people are talking about aging and caregiving from very different perspectives.
I find a blog called Watching the Lights Go Out particularly compelling. Much of what we read and hear about dementia comes from family members; a firsthand account of life with Alzheimer’s disease is much rarer.
We can understand why, perhaps. Some people get the diagnosis everyone dreads and withdraw in fear or shame; others can no longer summon the concentration and verbal ability to explain their experiences to others.
But Dr. David Hilfiker, a retired physician and author in Washington, D.C., took to the Web. When he began posting in January about his “adventure” with Alzheimer’s — and that’s the word he uses — he provided a thoughtful window onto a condition that touches millions of lives.
At age 68, he’s frank about what he’s had to give up (bookkeeping for his church, because he made too many errors) and what he’s held onto (driving, for now, and biking) as his cognition slowly declines. He contemplates his fears: vulnerability, dependence, isolation, the burden on his family.
But Dr. Hilfiker sounds surprisingly sanguine about life with dementia. In February, for example, he told readers that he’d added a week to a planned West Coast visit with children and grandchildren. “My diagnosis gives me an ‘excuse’ to live a more fulfilling life,” he wrote, after years of playing “Dr. Responsible.”
His blog led to a Washington Post article, which led to a spike in his blog traffic and, in turn, to a contract for a book (and a collaborator to help him assemble it), scheduled for publication late next year.
Readers of Watching the Lights Go Out include other people with early dementia who express “a lot of gratitude for bringing this disease out of the closet,” Dr. Hilfiker told me. Caregivers e-mail him, too, saying that “it’s helped them to understand better what their spouse or parent is going through.”
He’s careful to point out that he’s in the very early stages of dementia, that “I don’t know what’s coming later.” But for now, “this is not as scary a disease as I thought it was and as the whole culture thinks it is,” he told me.
He recognizes, with sorrow, the toll on his caregivers. But for himself, he says, “this is almost the happiest time of my life.”
I can also recommend Life in the End Zone, a very different reading experience. Dr. Muriel Gillick serves as a caregiver for her 89-year-old father, so she can speak personally about, say, the apparent shortcomings of the much-touted “culture change” approach to nursing homes. She also cares for her 87-year-old mother, who recently moved into her home in Newton, Mass.
More to the point, as a geriatrician and palliative medicine specialist at Harvard Medical School, she can knowledgeably discuss the latest research on kidney dialysis, patients’ sometimes misplaced optimism, and its consequences for their treatment. Not many physicians — trust me on this — write as clearly and colloquially.
Dr. Gillick is the author of several books, including the wonderfully titled “The Denial of Aging: Perpetual Youth, Eternal Life and Other Dangerous Fantasies.” She intends to post weekly on a range of topics related to advanced illness and end-of-life care. “We spend a ton of money taking care of sick old people, and we do a pretty crummy job,” she told me. “That doesn’t make much sense.”
She hopes that patients, families, health care professionals and policy makers alike will read Life in the End Zone — and on the basis of her first few posts, they should.
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”