July 18, 2011
Response by Lindsey Moore to the article Compassion Fatigue Within Double Duty Caregiving: Nurse-Daughters Caring for Elderly Parents by Catherine Ward-Griffin, Oona St-Amant, and Judith Belle Brown (January 31, 2011).
I am a nurse who provides care to a family member in a role not acknowledged in the article addressing compassion fatigue associated with double-duty caregiving by Dr. Ward-Griffin and colleagues. I recognize that we have many nurse-daughters who care for their elderly parents within our profession. Yet we also have a number of nurse-mothers, like myself. My daughter was born with a fatal heart defect that required her to undergo an infant heart transplant. In addition to her cardiac issues, she is also immuno-compromised due to her rejection drugs and requires feeding through a G-tube.
I do not mean to negate the experience of nurses faced with the task of caring for their elderly parents. However, this is a role that is commonly taken on by many daughters (and sons). The role of a mother as a caregiver for her child is also commonly accepted. But when someone like myself becomes a nurse-mother, the role goes beyond what is normal and customary. It has been my personal experience that there are even fewer resources available to nurses in the nurse-mother position than to those in the nurse-daughter role.
The article touched on the difficulty of considering long-term care as an option for elderly parents. Nurses who have children with special health needs often do not have this option. We also ‘live on the edge;’ and in all honesty, sometimes we want to jump off of that edge! Instead, we smile and say to ourselves and our co-workers, “It’s not that hard and we can do it.” But, the truth is that doing so is often impossible; and we kill ourselves trying. While attempting to care for my child and my patients I neglected to care for one other person…myself.
Caring for patients while caring and mothering a sick child proved to be too much for me. Depression, anxiety, low self-esteem, and unresolved grief ended my clinical nursing career at a job I loved. I was forced to realize I could not meet the expectations I had placed on myself as a caregiver. I had to make a choice for my own sanity.
My daughter is now my only ‘patient’ and her care is a full-time calling. I encourage Dr. Ward-Griffin and her colleagues to also research the lives of nurses who are mothers of children with significant health issues and/or special needs. I believe that we experience caregiver fatigue in a very different way than the nurse-daughters featured in this article. Mothers of special needs children, like myself, are told by others that God chose us for a reason. Yet well-meaning sentiments, such as this, only add to the pressure we feel. How can a nurse-mother show weakness and vulnerability as a caregiver when her peers tell her she was ‘ordained’ by a Higher Power? I personally internalized this belief and placed unrealistic expectations on myself as a nurse and a mother. As a profession, we need to be careful not to put double-duty caregivers on a pedestal. We double-duty caregivers need compassion and support from our fellow nurses; we do not need the additional pressure of coping as others believe we are or should be coping.
Lindsey Moore, RN, BSN, CLNC
Baton Rouge, LA