Caregiver Support

Senior Lady in Wheelchair Holding HandsNo one asks for a chronic health issue to strike their loved ones, but it happens, and the ability of caregivers to stay strong for the long haul becomes essential.

The importance of self-care for caregivers was validated anew after reading an email from the BMT InfoNet, an information and support network for transplant survivors, another subset of the BFS community.  The BMT InfoNet held its Sixth National Celebrating a Second Chance at Life Survivorship Symposium  in New Jersey this September and included several workshops aimed at supporting caregivers.  One is titled Caregiver Self-Care: Put on Your Oxygen Mask First and discussed the importance of the caregiver’s role, why the job is so stressful as well as some important self-care tips. 

There are so many different kinds of support.  Here are just a few those in the BFS community may appreciate:

  • The SJS Foundation maintains this yahoo-based SJS/TEN discussion group in which over 200 members offer support to SJS patients and their family and friends
  • SJS Kids Support is a discussion board for children and teenagers (monitored by the SJS Foundation for safety) that have suffered from SJS/TEN or had a family member who does.
  • The National Keratoconus Foundation maintains an email list-serve to provide support from the KC community.
  • The Sjögren’s Syndrome Foundation coordinates volunteers in 35 states and Canada who can provide one-on-one support about day-to-day living, coping strategies, education and support about Sjögren’s syndrome.
  • Caring Connections is a BMT InfoNet program that helps transplant patients and family members find others, who have been through or helped a patient through transplant.

This is just the tip of the iceberg.  There are is so much vital support out there and our goal is to connect you to it.  Are there any favorite sources of support you could add to this list?  And, do you have any insights about how to maintain balance between giving and how you fill yourself back up so you can keep on giving?  While there are disease-specific supports available at the resources noted above, there is also wisdom about balance and support that crosses the boundaries of disease.  How do you do it?