Wednesday, January 17, 2007

Where are the HD caregivers?

I debated intensely with myself as to whether I would admit this or not. But in order to share this with you I am forced to admit that I'm old and that I read old people stuff. I was flipping through my recent copy of the AARP Bulletin and my eyes landed on an opinion piece titled "Who Will Care for You?" by Robert Butler, M.D.

It starts off with a quote from Rosalynn Carter -

There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; those who will need caregivers.

The article was primarily about the challenges with finding caregivers for the elderly and what should be done to prevent a crisis situation from developing. But OUR crisis in the HD community is now and we have the exact same needs for those in the later stages of HD.

It doesn't look good. Dr. Butler observed that paid caregivers can often make more money working in a fast food restaurant. Unpaid caregivers get virtually NO help! There are efforts through community colleges to start providing caregiving education and job assistance, but it is definitely in it's infancy.

The two organizations that are focusing their efforts in this area (for the elderly) are the Schmieding Center for Senior Health and Education in Springdale, Arkansas and the International Longevity Center in New York. These two organizations are behind the Caregiving Project for Older Americans. I'm wondering if there is something to be learned that could be used for a "Caregiving Project for Huntington's Disease Patients".


I'd like to point out that I've taken what I've learned during my efforts to advocate for embryonic stem cell research and reworked the HDAC Political Action Portal to "optimize it" for advocacy work. The URL for the page is I'll be continually updating this portal to reflect what's going on and what I'm blogging (or blathering) about here.

1 comment:

Anonymous said...

Personally, I think that the issue of care-giving, needs to be looked at more laterally. Society has to create a sense of community to look after the old and infirm. At the moment the resposibility, seems to fall on one person. This pressure is too much, and there is then a danger that they need looking after. It's a hopeless spiral, which is incredibly short-sighted of those in authority.