When someone we love becomes ill, the normal patterns of daily life come to a screeching halt and our focus concentrates on restoring our loved one to their maximum potential. The impact of living with a disease is much deeper than going to see a doctor, taking medications, or attending physical therapy. The effects are wide-spread and ripple like a giant wave consuming our lives, taking away from time with family, careers, and hobbies. The primary caregiver can feel swallowed by the overwhelming sense of responsibility and the lack of control. Not only must they continue to function as if the world were normal, but they care for and support their loved one without reprieve.
The Merriam–Webster dictionary describes burnout as “exhaustion of physical or emotional strength or motivation usually as a result of prolonged stress or frustration.” Caregiver burnout is a problem often overlooked by the healthcare team as the patient remains the primary focus. It is also important that caregivers not minimize their role as a vital member of the team. Think of what happens before liftoff when you are on a plane. The flight attendant will instruct the passengers that in case of emergency a parent must put on their own oxygen mask before placing one on their child. As a nurse I must constantly remind our caregivers of the same lifesaving instructions. If all of the focus is on the patient with the illness to the detriment of the health and wellbeing of the caregiver, then neither the patient nor the caregiver will benefit.
Take a look at a timeline of Caregiver Fatigue Symptoms adapted from Washington State University:
Although every caregiver may not go through all of the stages as described above, it is important to be aware of the signs and symptoms of caregiver burnout. Take action early to avoid burnout by recognizing the signs of fatigue early, get involved with support groups, find resources, reduce stress and share the workload. Many centers have social workers, counselors and nurses that are trained to address caregiver burnout. The most important thing to remember is that you are not alone; there are people who care and want to get involved.
National Alliance for Caregiving – www.caregiving.org
The NAC conducts research and policy analysis, develops national programs, increases public awareness of family caregiving issues, works to strengthen state and local caregiving coalitions, and represents the US caregiving community internationally.
National Center on Caregiving- www.caregiver.org
The program was developed in 2001 to advance the development of high-quality, cost-effective policies and programs for caregivers in every state of the country. Uniting research, public policy and services, the NCC aims to serve as a central source of information.
Today’s Caregiver Magazine – www.caregiver.com
Today’s caregiver provides tips, resources, online discussion and encouragement.
The Well Spouse Association – www.wellspouse.org
Advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner.[/toggle]
~ Audrey Ayres, RN, BSN, CCRN
UT Southwestern & Children’s Medical Center MS & Demyelinating Disease Program