A Caregiver's Notes

The Caregiver's Paradox

by Hana Pester

Before he'd even started chemotherapy, my life-mate Ariel disqualified me. "Knock it off," he insisted furiously, after I'd spent 20 minutes staring out the massive hospital window and babbling about tests, medications, scenarios, options. "You're not my nurse. You're not my social worker. You're my partner, period.  That's what I need from you that I can't get from all these professionals," he paused disdainfully, "Be my partner."

This is the caregiver's paradox.  If we can learn anything from the presence of an acute illness in our lives, it is how to live openly in flux, to respect change, to adapt.  But this is not what our suffering beloveds want from us while they feel out of control. They want us to stay the single constant in their volatile world.  Outwardly I tried to do this right away, as soon as Ariel asked.  I smiled more. I planned and questioned less. I no longer began our nightly time together with "How are you feeling," but just with "I love you and I've missed you." 

Internally, though, I couldn't let go of the flux. I had to be a partner, but what was happening to my partnership? It had been on the heels of significant fear and chaos that I had started to detach from my relationship. Eventually, as Ariel proceeded through seemingly endless tests and evaluations, we worked out a compromise. I would learn everything I could about Ewing's sarcoma, the obscure and dangerous cancer that now dwelt (very likely—the brilliant specialists were still debating) in Ariel's pelvis. I would challenge what needed challenging but the rest of the time I was there to soothe, distract, keep company and above all keep some breath of normalcy in the air. Meanwhile Ariel would trust his doctors. We knew they were some of the finest in the world, and he needed to commit himself to the upcoming treatment if he would uphold the will to survive it. We began to emulate Gloria Steinem's claim, "God may be in the details but the Goddess is in the questions."

This particular phase of acute caregiving - being partner, parent, or generally primary pair of arms for someone moving through the diagnostic process associated with a sarcoma - presents characteristically overwhelming challenges.  While this person you love endures pain and uncertainty you will endure helplessness and exhaustion. It helps to know that together you are moving toward answers and options. A recent diagnosis may have forced you to navigate a new world of medical terminology and protocols.  Or it may simply have demanded a profound shift in perspective, if you are a medical professional who suddenly is also personally a caregiver.  Either way you may feel overwhelmed by the new and demanding role you now must assume.

This series of articles will walk you through some issues of care and personal relationships that are common among sarcoma patients’ loved ones and which may be uncommon elsewhere.  In the next issue of ESUN we’ll discuss Caregiving through Diagnosis. Because physicians will follow a specific testing protocol to verify the presence of a rare and serious disease like a sarcoma, it’s useful to understand the reasoning behind this sequence and learn what you can do to support someone in the middle off all this, who faces traumatic pain and uncertainty. This first article in the series will also include suggestions for managing the duties of life outside the hospital alongside the demands of acute caregiving. We’ll share insights from a palliative specialist who understands the vital role of pain management before sarcoma treatment even begins. We’ll also include a list of frequently asked questions and some constructive responses related to the diagnostic process.

V1N3 ESUN Copyright © 2004 Liddy Shriver Sarcoma Initiative