“The Pain of Caregiving” (essay in STAT)

This essay by Judith Graham is about seeing loved ones in pain.  Here are a few excerpts:

“What does a caregiver do in these circumstances, when someone you care for is in extremis?  If you’re scared as hell — a natural response — you go quiet, maybe leave the room. If you stay, you try not to minimize their agony. It’s their right to have it acknowledged.  So, maybe you say, ‘I’m here. I’m with you. I’m staying with you. I’m not going away.’  Or maybe just ‘there, there,’ as you would to a child. Or, ‘Hang on. We’re going to get you help’ — if you think help is available.”

“[My] sister in the early stages of frontotemporal dementia…called me often, asking, ‘Why is this happening to me? Why?’  I didn’t have an answer. I didn’t know what to say.  Why does devastating illness strike some and not others? Is there an adequate response to this existential cry of anguish from someone you love?  To me, this was worse than the physical pain I witnessed earlier in life.”

“For me, a sense of profound isolation eased when I came upon an essay by author Ken Wilber, ‘On Being A Support Person.’ In it, Wilber describes grappling with powerful negative feelings as he cared for his wife, Treya, who had cancer.  Anger. Irritation. Frustration. A desire to run away. An impulse to lash out. The torment of helplessness.  It took Wilber years to understand that his responses were a distraction — a way of avoiding Treya’s fear and sadness as well as his own. … Eventually, he realized the only way forward was to accept the vulnerability, the anguish, and the dread. ‘Your job is to hold the loved one, be with her/him, and simply absorb as many of those emotions as you can.'”

Here’s a link to the full essay:


I didn’t want to witness the anguish of loved ones in unbearable pain. But how could I not?
By Judith Graham
May 12, 2017