02 August 2011

Support our supporters!

Being disabled sometimes means needing to ask for help. Unfortunately, those that help us -- family, friends, those that we love the most -- often feel that they don't have anyone to ask for help. Often they feel alone even though, according to the National Family Caregivers Association, they belong to a community of 65 million. Whether our reliance on others is temporary or permanent, a few months or life-long, it's important to remember that our supporters need our support too.

Whether full-time or part-time, it's important for caregivers to take a break now and then. Or better yet, to schedule a regular day off and allow themselves an indulgence from time to time. A walk in the park or an ice cream cone are inexpensive (and not too time-consuming) ways for caregivers to get some down time. A walk in the park with an ice cream cone -- and a dog -- is even better!

Most importantly, like us caregivers need someone to talk to who shares their questions and problems. It's common for caregivers to feel that they can't or shouldn't complain. "How can I complain about caring for someone I love? They need me so much," is often rationalization for subsuming their own needs and feelings. Caretakers need to be reassured that it's ok to have a bad day, or that it's ok to dislike emptying a chamber pot. It's hard work!

Just as there are support groups for amputees to share insight, advice and encouragement, support groups for caregivers provide a much-needed outlet to discuss common issues. Most communities now have local support groups for caregivers. Go online and google "caregiver support" plus the name of your town. Contact your local community center or senior center (even if you aren't a senior) and ask about local support groups. And there are lots of resources online. At medicare.gov, you will find information on a number of topics: financial help, legal assistance, planning and more, including this PDF download (printable brochure), "How can you care for yourself when you're caring for others?" The US Department of Health and Human Services' Agency on Aging offers online an explanation of the National Family Caregiver Support Program and links to additional agencies that conduct research and work to improve public policy.

In my quick search, I found some other more innovative online resources:
  • Caregiver.com: An online feature provided by Today's Caregiver magazine. Includes online access to the current issue of the magazine, archives of their newsletter, an advice blog, links to local resources and more.
  • Children as Caregivers: An article from caregiver.com about children and the physical and emotional stress kids experience as caregivers in a home with a disabled or chronically ill adult. Written by a registered nurse, it offers an interesting point of view that I hadn't considered.
  • Caregiving.com: A collection of blogs by individuals who are caretakers of parents, children, grandparents, siblings, spouses, etc. This is a great resource for caretakers to read about others' experiences and also share their own. The site also offers downloadable podcasts and an internet talk show.
  • Connecting Caregivers: three online resources provided by the National Family Caregivers Association include The Caregiver Story Project (you can share a story, read stories by others, and find a penpal), E-communities (linking caregivers in the same local area), and the Family Caregiver Forum (an online forum to ask and answer questions on a variety of related topics).
One of the nice things about all of these online resources is that you can look around and choose which one suits you best. You can take just a taste of each, watch from the sidelines, or jump right in. Have you found a particular resource that you enjoy interacting with (such as our own Amputee Empowerment Partners)? Please share it and your experience with us!


No comments:

Post a Comment