CARING FOR THE CAREGIVER

Caring for persons with complex chronic illnesses such as Parkinson’s disease can have a lot of impact on informal caregivers such as family and friends. It is vital for us to support such caregivers in order to reduce the potential of strain and improve their emotional well-being so they can continue their caregiving responsibilities. My research for the last few years has highlighted caregivers who can become overwhelmed at times. One caregiver in my study had this perspective. “I see caregivers that themselves need to be cared for. Maybe they have stress, maybe they have depression, maybe they have whatever, but they almost need a caregiver themselves.”

I have found that a diverse support network is crucial to caregiver well-being and it helps families care for their loved ones at home longer. Examples of support have included families, friends, coworkers, support groups, respite, health care providers, spirituality and even pets. Caregivers specifically felt that peer led support groups had positive healing energy in their caregiving journey.

It is amazing to see the dedication of Jo Rosen and the Parkinson’s Resource Organization (PRO) in bringing together such strong support networks to the Parkinson’s community. In my current study, we are looking at caregiver well-being and specific ways to measure their risk of strain.

Jo has been crucial in helping to let the community know about my current study so that caregivers could participate. PRO is the epitome of a far reaching support network that has a powerful way of sharing knowledge about this illness, promoting professional assistance to the community, and sharing stories of experiences of caregiving and living with Parkinson’s disease. This organization provides this important contribution to the community in a way that lets people feel the humanness of caring through Jo Rosen and her staff.

Resources:

Abendroth, M., Greenblum, C.A., & Gray, J.A. (2014). The value of peer-led support groups among caregivers of persons with Parkinson’s disease. Holistic Nursing Practice, 28(1), 48-54.

Abendroth, M., Lutz, B.J., & Young, M.E. (2012). Family caregivers’ decision process to institutionalize persons with Parkinson’s disease: A grounded theory study. International Journal of Nursing Studies, 49(4), 445-454.

Maryann Abendroth is an Assistant Professor at Northern Illinois University School of Nursing and Health Studies in the Greater Chicago area.