Support Resources for Caregivers

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

Many of our community members serve as caregivers on a daily basis for their loved ones. It’s not an easy thing, truly a 24-hour-a-day job, and can increase the caregiver’s own health risks for physical and emotional stress or outright burnout. We’ve begun a list of possible support resources that could be helpful to you. As always, be sure to do your homework and ask around in our community here, as well as among other forums or groups you may interact with regularly. They may have some other tools to suggest.

  • A journal. Some caregivers find that a great stress relief tool is writing everything down. Sometimes just having a place to vent and pour out your thoughts and feelings can do wonders. If you prefer to keep your thoughts to yourself or share with just one or two other people close to you, consider picking up an inexpensive but inspiring journal or notebook at the bookstore or even dollar store. The National Caregivers Library offers tips for how to set up your journal or workbook and what topics to tackle to provide a good sound board for yourself.
  • A blog. On the other hand, if it’s more important to you to start a conversation with others facing similar challenges – to discuss care issues, for example, or ask others about particular topics – then an online journal or blog is the way to go. The EB community has a strong, supportive network of bloggers worth checking out, those willing to share their lives not only with others unfamiliar with EB to educate and raise awareness, but also with those of us who are or have been personally touched by EB. We frequently make suggestions for bloggers to follow, but we want to hear from you: who are some of your favorites to recommend?
  • Online communities. Interacting with people across the country – across the world! – has never been easier thanks to wonderful tools like Skype, virtual “neighborhoods” such as Facebook communities like ours and web forums like EB Friends. For caregivers, just being able to reach out – to pose a question, ask for a recommendation or vent – can be such a great stress relief.
  • National caregiver-focused organizations. Groups like the National Family Caregivers Association and the National Alliance for Caregiving are available to provide helpful information and other support resources on their website and through literature and presentations from their organization. We found their Family Caregiving 101 site to be especially useful.
  • Support groups. While you may not locate a group specifically geared toward EB or, if you have a small child, a support group for parents of children with life-threatening conditions or diseases, it is very possible that a local hospital may have a caregivers support group. Sometimes just talking with others about their strategies for staying strong, healthy and focused can be beneficial.
  • Neighborhood sidewalks, area parks, the gym or your local Y. Simply getting up and walking or taking part in some form of aerobic exercise is truly one of the best things you can do for yourself as a caregiver. highlights a number of great activities beyond walking to get you moving and help alleviate tension, including dancing and yoga. So channel that stress through physical activity and do something good for your body, mind and spirit. You’ll help not only yourself but also the loved one you are caring for.


Resources for Caregivers

Being a caregiver can be a stressful and demanding job, yet to those with EB, the role is truly a critical lifeline. We’ve gathered a list of some online resources that may be worth checking out. These sites can offer helpful information, links to organizations that specifically provide support to caregivers, and practical tips about managing the care of others, stress management and self-care, as well as other relevant topics.

*The following links are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of a medical care or mental health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

Do you know of any additional resources to suggest to any caregivers who may be reading? If so, please comment here at this blog or at our EB Resource Facebook community and thanks in advance.

The Rosalynn Carter Institute for Caregiving
The Family Caregiver Alliance
Family Caregiving 101
“Taking Care of You: Support for Caregivers,”
The National Family Caregivers Association
Caring Today Magazine
Today’s Caregiver Magazine
Caregiving in America Magazine

Related Posts:
100 Links for EB Families
Support Networks vs. Support Groups
Becoming a Proactive Caregiver