The Hardest Caregiving

At this blog we talk a lot about caregiving and cancer. We also talk about caregiving for an aging parent and caregiving for a loved one with dementia. I’ve never liked the idea of a hierarchy of suffering. I have always hated that talk of, “man with no shoes meets a man with no feet” which always feels like a way to shame someone’s pain. When we suffer we suffer. When caregiving is hard it’s hard.

So when I read Emily Rapp’s new book I had to keep challenging myself on this, “no hierarchy” idea. Her astounding memoir is called, “At the Still Point of the Turning World” in this book Rapp writes about caring for her son Ronan after he is diagnosed with the always fatal, always terminal Tay-Sachs disease. He was nine months old. He would not live past three years.

But Rapp took on that very hierarchy fallacy in her story. She talks about the way that we-- and even she—have a tendency to measure suffering, grief and death: what’s worse: an old person versus a younger person, an adult versus a child. But Rapp, who is fully entitled to say, “I win; I have the worst caregiving role” does not play that card. Rather she uses her story to show all of us what it’s like to fear and to suffer, to anticipate death and then to grieve...and she shows us most stunningly how to have a life that while not joyful, also includes joy while she is Ronan’s mother and caregiver.

I know this may not sound like the book you want for spring break or the beach—but it really is. Rapp is so smart and so literate and so personal in detailing exactly what a howl of pain is like that you want to stay very close to her and say “Thank you for letting me know about this intimate part of being human.”

In a late section of the book Rapp describes a workshop she attends on “Being With Dying” to prepare herself to be with her toddler as he dies. She shares this lesson:

 “At Upaya they taught us that to be fully present with a person who is dying you must have a strong back and a soft front. Most of us live with the reverse. We are outwardly defensive, and because we resist compassion we are actually weaker.”

Please take a look at, “The Still Point of the Turning World” by Emily Rapp.