Exploring Caregiver Fatigue

by Anne Adkinson

The term “caregiver” in the brain injury community can be complex and varied. Unpaid family and friend caregivers can be a key to recovery and living well for survivors of head injury. However, calling yourself a “caregiver” when referring to care provided for someone we love who was independent before an accident, illness, or injury can sometimes make the situation we are in all too real. It can be hard to admit those we love need our help to stay safe and healthy after a brain injury. Since life doesn’t stop when a brain injury occurs, survivors of brain injury often find themselves returning to caregiver duties for children or grandparents and acquiring new caregiving duties as parents and spouses age. For this issue’s theme of “fatigue”, Anne Adkinson explores her first experience as a caregiver and the valuable lessons she learned.  Anne is currently a caregiver for her husband, a combat veteran who sustained a brain injury.

I first experienced being a caregiver when I gave birth to my son. After several miscarriages, 16 weeks of strict bedrest, 22 hours of labor, and an emergency C-section, I was handed the most beautiful boy I had ever seen. I remember being surprised he looked just like my mom.  I couldn’t wait to take him home and begin our lives together. However, within the first few days of his life he ended up back in the hospital because his tiny organs began shutting down. It was terrifying. I begged, pleaded, and prayed to everything in the universe that he would recover.

My sister-in-law, who gave birth a few months prior, came to visit us in the hospital.  After days of trying to keep a brave face, I completely fell apart, assuming she’d be a soft place to land.  I sobbed as I shared my fears of losing my child, my guilt for his suffering, and the gut-wrenching feelings of helplessness and hopelessness. She listened quietly as I poured out my soul then offered what I hope she thought was support: “This should be the happiest time of your entire life.  You should be more grateful for this opportunity.” It was a stunning, cutting response.  I needed to vent my pent-up emotions and sought validation for the fear and anxiety I experienced while also recovering from major surgery myself.  Instead, I met my first experience of being shamed as a mother.

That evening my mom came to visit us in the hospital.  Misty eyed, I kept my feelings to myself after my earlier experience .  She watched me for a while, then kindly took the baby from me and without an ounce of judgment said, “Being a new mom is hard, especially in the beginning.  It’s amazing what sleep can do.”  With that she sent me home with strict instructions to eat, shower, and sleep while she stayed with the baby in the hospital.

It was the best sleep of my life.  My mom was right,  It IS amazing what sleep can do.  That one act of kindness free of judgment changed my entire outlook and enabled me to be the strong, brave mother I needed to be for my child.  This was the first of countless experiences with my mom guiding me along my motherhood journey.  My son ended up making a full recovery, now healthy, happy, and thriving as he heads into his senior year of high school.

Being older and wiser I look back on that experience and realize several things.  First, it’s not fair to ask someone to have skills they don’t possess or allow my feelings to get hurt when someone isn’t capable of showing up in a way I need.  I already knew my sister-in-law to be critical and I shouldn’t have expected her to be different.

Second, my mom was the perfect example of how we can help others in distress.  The key is offering kindness free of judgment.  If my mom hadn’t recognized the signs of caregiver fatigue and intervened, my distressful moment could very easily have turned into a crisis.

Third, it truly is amazing what sleep can do.  By neglecting my own needs and ignoring the warning signs of fatigue I allowed my physical, emotional, and mental exhaustion to reach a boiling point and I could no longer function properly.

Fourth, let’s all agree to stop shaming each other.  It only makes things worse, perpetuates negative stigmas surrounding mental health, and prevents people from getting the help they need until their situation spirals out of control.

Warning signs and symptoms of caregiver fatigue:

• Feeling depressed or anxious
• Mental and/or physical exhaustion
• Struggling to think clearly
• Irritability and mood swings
• Neglecting one’s own health and wellbeing
• Disrupted sleep

What to do if you experience caregiver fatigue:

• Ask for help!  Confide in a trusted friend, relative, clergy, counselor, or doctor.  If they can’t help you, ask someone else until you find someone who can.
• Take steps to address wellbeing like sleep, mindfulness, exercise, and nutrition.
• Seek professional help.
• Stop feeling guilty for having these feelings!  It’s a normal part of being a caregiver.

Anne Adkinson is a Women’s Brain Health Navigator for Veterans and Military Families. She resides in sunny Arizona where she is a mom, a proud military spouse and caregiver to her husband who is a combat veteran. She is also the mom of a US Marine.