Loving Thoughts for Caregivers

Never once during decades of caregiving did I ever consider I might lose myself in the process.

I was just 20 when I became a mom for the second time but this time was different. My baby daughter was diagnosed with a heart condition called tricuspid atresia and my world was about to change. Hindsight shows me that my entire adult life has been overshadowed by her condition and unknowingly somewhere along the way, I lost “me.”

This shocked me because I had a busy life filled with my own drama and her care was simply another element of mothering. Failed relationships, divorce, and working full time as a single mother to two young daughters were just some of the challenges I faced. My life was busy and I juggled my responsibilities like any busy mom or dad would do.

I’m sharing this insight in the hopes that it will prevent others from forgetting themselves in the process of caring for a loved one. I thought I handled things beautifully and never gave much thought to stress and anxiety. It was just a normal part of raising kids and living with a CHD child.

Although we faced many surgeries and tests over the years, against all odds, Lorie continued to thrive. I didn’t realize that I was living in a limbo of existence, subconsciously waiting for the “other shoe to fall.” It all came to fruition about four years ago when she collapsed with an embolism and my worst fears were realized. Miraculously she survived, but life had changed drastically and her heart was failing.

My immediate response to anyone was always a smile and “I’m fine, I’m doing great.” In reality, going through crisis after crisis never knowing which day I might lose my daughter should have indicated I couldn’t possibly be OK. Yet, I never considered counseling or getting any kind of help for me. I was in denial concerning her and myself.

And then we experienced our miracle. Lorie underwent a successful heart transplant and her recovery has been amazing. And that is when my crisis began. Unfortunately, it took a serious injury to get my attention and force me to be quiet, be still and heal. Since my fall, I have experienced anxiety attacks and a fear like I’ve never known. It was in the letdown I encountered the truth that I hadn’t really been OK at all and that we caregivers have a tougher time receiving than giving. My need for a few months of allowing others to care for me has been a huge and humbling lesson and I began to embrace the blessings hidden in my pain and lengthy healing and to discover some well-hidden truths.

My identity of 49 years is gone. My caregiving duties are barely needed now; I’m no longer living on standby. Joy had also left a huge hole in my life. As the post-transplant months passed and Lorie continued to thrive, the let down period, both physically and emotionally, began for me—and I crashed. While I was ecstatic with Lorie’s outcome, it’s difficult to comprehend how I could feel such severe anxiety in my body. Our prayers of many years had been answered with an even better outcome than we dared to imagine.

Slowly, through journaling, meditation and prayer, the light bulb in my mind came on. I didn’t know who I was anymore; I had given up my identity decades ago when I was too young to even have an awareness of identity. It’s ironic that during her 49 years with her original heart, Lorie never allowed her condition to define her—but somewhere along the line I had allowed it to define me.

I am labeling my experience as a form of post-traumatic stress and it is an insidious, hidden emotion. Now it’s time for me to heal myself and move on. I sincerely hope my story will be of benefit to others to create an awareness and honesty about how they really feel and not deny it until it’s too late. And if you’re feeling lost, possibly what you have lost is “you.”