Primary Care Givers (in the Compassion series)

The place where I receive my infusions accommodates two patients. We sit in comfortable leather recliners and watch movies on TV while the medication is slowly pumped into our veins. My infusion-buddy the first time was an older woman. I don’t know how long she has fought MS, but it clearly has taken a greater toll on her than it has on me. She was so frail and had a hard time getting comfortable. Her voice was weak (but not as strained as mine!) I noticed something else, someone else actually, that led me to this insight. It was her husband. Seeing him and visiting with him it was evident that he was his wife’s primary care giver. He carefully helped her to the chair, answered all the nurse’s questions that he could, and although he did chat with me, I could tell that his first and overarching priority was her.

Who are these primary care givers? (PCGs for short.) Often it is a spouse but can also be a parent, child, or a dear friend. I have never been a PCG for anything protracted, but as I’ve taken notice and thought a lot about this, I have realized some things. For starters, rarely does a PCG choose that role. Who would? In most cases, they are thrust into it with little preparation and high expectations.

My wife admits straight up that she does not like the role. She has commented, “I’m no Florence Nightingale” and just feels inadequate as a comforter. But that doesn’t matter. For me, she’s it, comfortable or not. She says she is not naturally compassionate, but I know that to be untrue as I have witnessed her show deep compassion for our children every day, for other children and teenagers. Also, her compassion was unmatched for her sister who was grieving the loss of a child several years ago. For her, these are more natural venues for her charity than her husband who has generally been pretty self-reliant all our married life.

In case there are any doubts, I can physically care for myself, with the exception of occasional help with a cuff button. Worrier that I am though, I’ve thought about the possibility that some day this disease, or some other ailment, may render me unable to care for myself. I know that day may never come, but I dread it mostly for Kara’s sake. Once I mentioned to her my fear that someday I may become a physical burden to her. She said, “Oh, not to worry. We’ll hire someone!” It was said tongue-in-cheek, and maybe this will be an option for us, but though we hire 100 home health workers, her role as PCG cannot be hired out nor delegated.

Another thought: Although the PCG is yoked with this incredible burden, because of the illness/injury, 99% of concern and sympathy is for the afflicted. Often the PCGs can feel overwhelmed and alone. Who steadies the hard of the care giver? Who comforts the comforter?