handsMy oldest daughter has moved away again—this time to pursue her master's degree at UCLA. ?This prompted some reminiscing that led to memories of my late husband, Larry, and our final years together before his Agent Orange-related death.  You might remember some of my story from my first Patient Power blog. Our youngest daughter is wrapping up her sophomore year at college, so I had plenty of time (and quiet) to pursue these memories.  As the sweet melancholy enveloped my thoughts, I found myself considering the role of care partner—a role that I certainly agreed to "til death do us part"—but not one that I felt adequately prepared for. ?Who is?

We all tacitly agree that tomorrow isn’t promised, but we live as if both long life and good health are guaranteed…until they’re not. And then, when the proverbial rug is snatched from beneath our feet, we are forced to view our newly diminished circumstances with a stark new philosophy.  Hard-core conversations on politics and lowered toilet seats are lost in a paradigm shuffle and are quickly replaced with a scholarly scramble to learn a plethora of medical terms.  It’s no longer important that the grocery shopping is done every Saturday morning, or that dinner be on the table at 6:00 PM, and your social calendar diminishes at a swift and alarming rate. Somewhere, amongst the myriad of doctor appointments and hospitalizations, the ebb and flow of the life you built together is replaced with a hollowness that belies the agony and stress of living with your partner’s diagnosis.

As life partners, we learned to adopt new roles and to wear multiple hats, as they say.  As care partners, we quickly learn to be adaptable and malleable, becoming adroit in such industries as nursing, pharm tech, PT/OT, insurance specialist, historian, philosopher, negotiator, valet and motivational speaker. There are many more hats that we care partners wear, and, in fact, in a moment of exasperation, I began listing them and came up with 50. I’m sure there are more. We take on these responsibilities, most certainly, out of love but our motivations are limitless; and, whether that be guilt or finances or OCD, we invariably find ourselves revisiting and restructuring our thought processes, each time circling closer to the possibility that this ends with us wearing only one hat: widow(er).

Patients with chronic illnesses who have a diagnosis with no immediate treatment refer to this limbo as Watch & Wait. They report that this is a time of unmitigated stress, citing uncertainty and lack of medical intervention as the most frustrating aspects of their disease.  You and I—and every other care partner—live in a constant state of Watch & Wait. ?And similar to patients who detest the unmapped, unknown of W&W, we find it a disquieting corner, full of shadows of things to come.

How have you coped with “watch and wait” as a care partner? Share your story in the comments section.

Stay tuned for Part 2 of this blog series, as I explore Coping Mechanisms: Taking Care of the Care Partner.

Standing in?the storm adjusting my sails,

Sheryl

Are you a care partner looking for more advice and support? Visit our Care Partner Center.

Andrew Schorr is the face and force behind Patient Power. Most people who know of him, know his story. Meet Esther Schorr, wife, business and care partner, and the force behind the force.  ?Watch our interview with Andrew and Esther to learn more about their story.