Last year, I had the privilege of caring for my dear father as his health failed because of complications from Parkinson disease, myasthenia gravis, and a stroke. My loving husband and three beautiful daughters were also intricately involved in his care, which became complicated several weeks before Christmas until he died in late March. I truly do believe it was a privilege, and I would not have chosen another path even if given the choice. My father died in the arms of my mother and me in his home late one night.
As oncology nurses, we need to be aware of the stressors of caregiving as we send families home to manage what are sometimes complicated regimes. Caregiving certainly can be stressful. One of the ONS PEP topics focuses on caregiver strain and burden. A strategy recommended for practice includes the use of psychoeducational approaches that use structured educational programs that provide information about the patient’s disease process, available resources and services, and training for caregivers. The other recommended strategy is the use of cognitive behavioral approaches to teach problem-solving abilities focusing on time management, overload, and helping the caregiver reengage in pleasant activities and positive experiences.
In the case of my father, my husband and I did not have to really learn any new skills to care for him. The stressors centered around time management. My two oldest daughters were challenged to implement the new skills they were learning as they both pursued their BSN. For my youngest daughter and mother the challenges at times were probably very overwhelming. They really did not have any training to prepare them for the challenges of caregiving. Clearly not having to learn new skills removes some of the stress. As nurses, we need to remember this as we send families home where they will have to do much of the problem solving to manage care.
Many positive aspects to caregiving exist. A recent study suggests that caregivers can be stressed, but benefits and rewards can also be found. Family caregivers were 18% less likely to die than noncaregivers over six years post caregiving.
When I think about the positive things that occurred as we cared for my father in addition to keeping him in the surroundings where he was comfortable and loved, we had a chance to remember and talk about things that were important. He was able to thank me in the middle of the night shortly before he died and tell me how proud he was of my family and my choice to be a nurse and that I persevered to get my doctorate. He told me that watching me get that diploma signifying the doctorate was probably as special for him as it was for me. My mother could be with my father whenever she wanted and had some very special conversations with him. My two older daughters learned that when families are discharged and have caregiver responsibilities they need support. My youngest daughter surprised herself and learned that she is empathetic and will always have the peace of knowing she helped provide her grandfather with dignified and loving care. She also realized that she wanted to be a nurse. My father would be thrilled to know that he taught his beautiful granddaughters so many important lessons, even in the end. They all learned that it is a privilege to be a caregiver.
As nurses, we need to communicate to families that caregiving can be stressful and that as nurses we will support families as much as we can. We also need to communicate that the effort expended may be rewarding. I miss my father in ways and at times and in situations I could have never anticipated. I doubt that will ever change. I do have the comfort of knowing that he received excellent care. It is truly a privilege to be able to share such special time with those who are most important to us.
Suzanne Mahon, RN, DNSc, AOCN®, APNG, is a professor in Internal Medicine and Adult Nursing at Saint Louis University where she has run the Hereditary Cancer Program in the Saint Louis University Cancer Center since 1999. She has been an oncology nurse for 30 years.