Earlier this week, I mentioned two of the more absorbing blogs I’ve come across recently, other corners of the online world where people are talking about aging and caregiving and the final phases of life. Now, let me recommend a couple of helpful Web sites.
First: the recently revamped LongTermCare.gov, produced by the Administration for Community Living, part of the federal Department of Health and Human Services.
When elder care has become practically a way of life, when you’re so deep in the weeds you can hold forth for 15 minutes on the complexities of “spending down,” it’s easy to forget how daunting the whole subject feels at the beginning. LongTermCare.gov, well designed and clearly written, serves as a useful primer, an introduction to the basics.
It’s been around since 2005, so “it was time for a refresh,” said Hunter McKay, program manager for the administration. “We wanted to make the content digestible and manageable.”
Now, the site has a pathfinder tool that allows you to enter your age or your parent’s; it then tailors content according to whether a person needs long-term care right now or probably will in the future. You’ll find a glossary of common terms, sections on advance care planning and information on how to pay for help, including long-term care insurance and reverse mortgages.
Past traffic showed that consumers want to know about Medicaid, so you’ll find a section that explains eligibility and benefits. Coming soon: a national map that shows — state by state — median costs for home care, assisted living and nursing homes.
A few weeks ago, a national telephone survey by The Associated Press-NORC Center for Public Affairs Research demonstrated anew how uneasy this whole subject makes us and how ill prepared most of us are to confront it. More than two-thirds of Americans will at some point encounter the need for help with daily living, remember. Yet in this sample of adults over 40, only about half understood that fact.
They underestimated what nursing homes cost and overestimated what Medicare pays for, and most had yet to discuss long-term care with family members. The whole subject of aging is one that 30 percent said they preferred not to think about at all.
But when they do decide to think about it, LongTermCare.gov provides a good starting point. You just hope people get there before a crisis hits.
Another subject that gives people the willies: what we have learned to euphemistically call “end of life.” Hence, a small spate of Web sites that guide patients and families through this sensitive territory, including The Conversation Project (founded last year by Ellen Goodman, a former syndicated columnist) and the more recent Prepare (produced by Dr. Rebecca Sudore, a geriatrician at the University of California, San Francisco).
Life Matters Media, which went live just last week, takes a different tack. “This is not a how-to,” Dr. Mary Mulcahy, an oncologist at the Northwestern University Feinberg School of Medicine, told me. “We don’t tell people how to have end-of-life conversations with their families.”
Life Matters, founded by Dr. Mulcahy and a Chicago television journalist, Randi Belisomo, instead serves as an information source on an array end-of-life issues. You’ll find recent articles from medical journals, which Dr. Mulcahy will translate into comprehensible English — no minor feat. A news wire section follows political and cultural developments and events. People post their personal stories in audio slide shows, and a series of columnists weigh in monthly on legal, health, religious and financial issues.
The founders are committed to “an unbiased approach,” Ms. Belisomo said. “We don’t have an agenda; we’re presenting the facts.”
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”