Caregiver Information Searches: The Good, the Bad, & the Ugly

[by Joanne Reynolds]

I just spent an hour on-line looking for resources cited in a recent article on caregiving. It wasn’t pretty. Only two of the six sites listed could be located with the URL (site address) provided. I spent a whole lot of time and energy trying to find the other four.

Have you found yourself in this frustrating circumstance lately?

Caregiving can be tough enough on its own. But sometimes it feels like you’ve run into a brick wall when trying to find support for yourself: a respite volunteer so you can take time off, information on your patient’s disease or condition, or simply resources that are available in your community or region.

There are resources out there, it’s just a matter of finding them. And that’s the problem. Caregivers are not overburdened with free time, so endless mining expeditions to find a source of help becomes counter productive. When you’ve got limited time, you’re not going to waste it on web searches or phone calls that only lead to more web searches or phone calls.

What follows are a few details of my searches, with the end results, which can save you caregivers precious time:

• I started by looking for the federal PACE program (Programs of All-inclusive Care for the Elderly). I know it comes through the federal Health and Human Services Department, but there was no website for it, just references to press releases, government documents and Congressional testimony about it. I finally found the site, which is www.npaonline.org . It’s the National Association of PACE, and it has a state-by-state listing of programs that are available. But that site has no direct links to those local programs. You still have to dig more to get the information that applies to you.
• The same problem exists with the Area Agencies on Aging, which exist to support caregivers of elderly patients. They are in every community in the U. S., but not necessarily under that name. You have to go to www.n4a.org (the Association of Area Agencies on Aging) to find your local agency.
• The article that launched all this searching also mentioned The Eldercare Locator, and it gave a long and complex URL, which failed to open the hoped-for page. There are two ways to find this important resource. You can go through www.aoa.gov (Administration on Aging) go to the Programs tab and then Eldercare Locator. Or you can go directly to www.eldercare.gov .
• One really terrific site if you’re looking for local resources is through the Family Caregiver Alliance at www.caregiver.org . It’s a busy website, but look for the map of the U. S. that’s labeled Family Caregiver Navigator for a state-by-state list of resources. Another easy-to-find program is Meals on Wheels. It’s at www.mowaa.org . This is a huge program that operates across the country, but, unfortunately not every community has one.

I hope my time spent on these searches can benefit you in your caregiving by providing you with shortcuts to resources and services that will support you and your patient.

Blessings, Joanne

Comments

[lauraa]

having spend a solid 2 years caregiving for my SO who had stage 4 cancer i know what it is like being a caregiver 24/7. the only respite i received is when she was in the hospital. respite care is hard to come by. i did get *some* help from family, but probably not to the extent i needed. most heath insurance plans do not cover respite care and if the patient is not elderly your resources dwindle. currently whenever i hear people saying they would like to volunteer for this or for that, i recommend they donate their time by providing respite care so caregivers can get a much needed break to recharge as caregiving is both mentally and physically demanding.

[Kirsten]

Thank you for your comment and suggestion. I don't know offhand how one would go about volunteering as a respite volunteer. I did a quick google search of "respite volunteer" and it looks like respite volunteer programs are run at the local level, through organizations such as churches, hospitals or disease specific organizations, like this one:

http://www.alz.org/wny/in_my_community_9161.asp

If you are interested in doing this kind of work, and getting training, it may take some effort to look in your community to find the right place, but the opportunities seem to be out there.

Thanks again for the comment and suggestion.

Kirsten