My friend and fellow writer, Doreen Pendgracs, recently wrote a blog about being a caregiver. I wanted to comment on it, but what I wrote was my own mini blog. With Doreen’s gentle prodding, I realized that writing about something personal can also be a valuable use of words. So here are my thoughts.
Most of us don’t go into relationships thinking about our possible role as a caregiver, but I knew from the day I met my husband that this would be my lot in life. I was in my 20s; so young and sure I could cure the world. It didn’t happen, and fighting it only wore me down.
We were told the original illness would eventually burn out, but if it has happened, it never really ever goes away. Like a chameleon it transforms and reveals itself in new forms, and I go into my caregiver mode again as we rush to the nearest hospital emergency room.
Our daughter grew up thinking that that all of this was normal for any family. As my husband convalesced in hospital following yet another surgery I would bring her, along with paper and crayons, and she would sit there creating her make-believe worlds with the reality of pain and suffering as her quiet background. When it was time to go I would lift her up and she would carefully navigate through the mass of tubes and IV lines to give Daddy a goodbye kiss until tomorrow. How could anything so unnatural feel so normal? And yet, for us, it always was.
I believe care giving can sometimes be more draining on the person giving the care, because of all the worry we go through. And with the health care system as it is, we have to be strong advocates for those we’re caring for.
I have had to make numerous phone calls to track down the right specialist to take on a new manifestation of the illness that was once easily diagnosed. I have had to yell at interns until someone listened. And I have cried on my own when I couldn’t take anymore, but I couldn’t let anyone else see how overwhelmed I was.
I think care giving is humbling and an important role in life. We do it because we love, and because we care. And because we care we give of ourselves.