Reflections of a Caregiver

 As we walk the path with our loved ones as they progress to end stage lung or heart disease, it is extremely important for we caregivers to maintain our strength and sanity. It is impossible for us to provide the needed support if we are crumbling inside and/or out.

How do we find the strength to deal with each day filled with fear, anxiety, sadness and anger? Every caregiver needs to develop coping skills to get through the day and you will all discover different & unique ways of accomplishing this. I would like to share some of the coping techniques I adopted.

I continued to work during the pre-transplant challenge. I felt I couldn’t cry at home, so I would take the stairs at work and cry in the stairwells, carefully composing myself before exiting.

The Dory Previn song Twenty Mile Zone became my theme song;

I was doing it alone,

I was doing it alone,

I was screaming in my car

In a twenty mile zone

Go ahead and scream, just remember to close the windows!

I soon realized these sad and frightening days were just drifting one into another. These were still precious days of my life that I would never have again. I decided that each day I needed to find a “Point of Joy” (POJ) whether it was a smile, a hug, a beautiful butterfly or a glorious blue sky. Each night before falling asleep, I would recall my POJ and concentrate on that.

When your loved one is in the ICU post transplant with multiple tubes and lots of drugs on board, you will be wide-awake and exhausted. The bubbling chest tubes can sound like a babbling brook or the Fountain of Trevi. Close your eyes, imagine and nap.

These are only a few ideas that enabled me to cope with the caregiver role and may help you as well. The love and support of family and friends is invaluable and faith/religion (if so inclined) can be the building blocks of your inner fortitude.

It is very difficult for anyone who has not experienced this to fully understand what you are going through. The important thing to remember is that you are not alone. We caregivers, who have travelled this path, are available to you. Please seek us out through your transplant program support group or transplant staff.