Spring 2003, Vol. 11, No. 1

Caring for Caregivers

By R. Scott Boots
Chicago, IL

Human service staff and volunteers give their resources, energy and skills to people in need or crisis – but who cares for the caregivers? When the Health Cares Exchange Initiative, Inc. (HCEI), an innovative educational public charity held nationwide focus groups, both paid and non-paid caregivers revealed they do not feel as supported as they would like. In response, HCEI developed dynamic capacity building and also stress management skills building seminars that have been presented nationwide.

Staff and volunteers who give their energy to those in need are at risk for emotional exhaustion and burnout, creating costly gaps in expertise and trainings. Caregivers transfer their patience, guidance, humor information and resources to people who are often living with fear, pain or crisis. But it's possible to articulate who and what causes stress in our personal and professional lives and to respond in healthy ways. Many causes of stress may be out of our control, however we are in control of each of our own responses.

AIDS caregivers, for example, have traditionally dealt with stress and stigma. Churches, friends, family and community resources often abandon persons living with HIV and AIDS, causing staff and volunteers to fill the gaps. The introduction in 1997 of the AIDS “drug cocktails” created a false security that the crisis was over. And while it's wonderful that persons living with HIV and AIDS will mostly live longer and healthier, this changed paradigm can create much stress. Now if your son or clients living with HIV or AIDS are also living with chronic pain, addiction or dementia you may witness their struggle for decades.

Burnout and mental health are still somewhat taboo topics, and care for the caregivers is becoming a very real issue in the face of nursing and teacher shortages. Self-sacrificing caregivers are hesitant to ask for support when they feel stress because there are often no effective resources in place for them and also they don't want to reveal “weakness” to their supervisors. More and more, however, organizations are realizing that it's more affordable to invest in education and retention rather than pay the high cost of recruiting and training.

In 1992 HCEI was founded at Boston in response to the stressors facing AIDS caregivers. HCEI's mission is to create supportive networks between diversely affected caregivers and then foster information and personnel exchanges between them. The organization works to enhance community-based care, encourage collaboration and educate caregivers about burnout prevention. HCEI held the first-ever nationwide focus groups for both paid and non-paid AIDS caregivers and has developed an interactive stress management skills building seminar and also a capacity building seminar for urban and rural providers. HCEI's initial focus was AIDS caregivers and has since expanded, working with a wide variety of caregivers and consumers.

Scott Boots, founder and executive director of HCEI developed and facilitates these workshops which have been implemented from New York City to rural Kansas.

“Everybody responds to stress in different ways,” Scott explains in his seminars. “Not everybody needs to meditate, some people need to be very active when they experience stress.” HCEI stress management seminars include writing and relaxation exercises and include practical solutions to stress including:

• Go for long quick walks in cemeteries and read the tombstones. Reading focuses your brain on just one thing, you get cardiovascular exercise and the location puts your issues into perspective.
  
• Ask for help. Caregivers are generally giving “in control” people who prefer to do things themselves rather than asking for help. But we can't do it all ourselves, especially when there are people who would help us if we only articulate what we need and trust them to do their best.
  
• Be silly. It's a short life, what would happen if you went to work or the grocery store in your pajamas?
  
• Keep lists and triage tasks. Persons who keep lists accomplish 40% more then those who don't.
  

For more information about ways you can work to celebrate and support caregivers in your community, please contact Scott Boots at HCEICares@aol.com, visit www.HCEI.org or call 617-499-7780.

 
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