Monday, March 09, 2009

Lifespan Respite Care Act; inventory of blogs about caregiving

Today, I looked through Blogger and Wordpress to see what people write on open blogs about their caregiving experiences.

First, and most important, I found a plea to support a Lifespan Respite bill to fund help for caregivers, The blog reads “Last week the House passed the FY09 Omnibus Appropriations bill that includes first-time funding of $2.5 million for Lifespan Respite….” and the URL (Caregiversupport) is here. I see that The “Lifespan Respite Care Act of 2006” already Public Law 109-442 so I’m not sure if this is simply a continuation of funding or an expansion.

Since Wordpress makes strong use of its “category” property, I found that Wordpress automatically indexes all its blogs with a “caregiving” label here. The most challenging entry for me was “Days of Darkness”.

On Blogger, one of the most interesting is HFAHospice, here. A February 23 2009 posting discusses Hospice care and the stimulus bill.

The CaregiversBeacon blog has a number of embedded YouTube videos, including one about recognizing dementia, and a 52 minute film about “Living with Congestive Heart Failure.”

WorkingCaregiver has an Essay Contest in the May 28 2008 entry.

On a site called “Everyday Health” a caregiver and blogger named Jeff Muise says farewell to the blog, here.

A particularly personal blog is this "Caregiver's Journal".

A number of trends are apparent from thumbing through these. Some people identify themselves as doing only caregiving. Some do it for a living, and some are family members who had no real choice. Many are not easily publicly identified, but some are.

Of course, in blogging in a public space about caregiving issues, it’s important to respect the privacy of patients and the “reputations” of caregivers, so in general they should not be easily identifiable, particularly to search engines.

There will also occur situations where a caregiver or a patient (either one, or even both) is already well known, in connection with other issues, including controversial ones, because of previous life’s work.

What’s important is to emphasize the issues, which these do.

Again, my own practice is to report on the political issues as I find them, as objectively as possible. I don’t just focus on one party’s needs, however compelling they may seem or how much immediate public sympathy they generate. These blogs are about putting all the pieces together in one large context.

Update: Oct. 4, 2009

There is an interesting members-only website, where families create their own care-pages websites, and have some control on how public or private they may become.

1 comment:

Linda said...

This is a critical issue. I am glad you have cataloged the blogs that have information. Good for you.