The Challenge of Caregiving: Rob Harris (Part 1/2)

I’m very honored to have Rob Harris here at Redwood’s Medical Edge today. He’s giving a first hand account of what it’s like when your loved one nearly meets death. Part 2 will be posted Wednesday.
Welcome, Rob.
7:24 a.m. The nurse tech entered our hospital room and took my wife’s vital signs. I was awake, dressed and ready to record her findings on my Excel spreadsheet. “Temp: 97.5; BP: 122/61, Pulse: 32,” she said as she turned to depart our room.
I looked up from my laptop, my fingers frozen over the keypad. “Excuse me,” I stopped her in her tracks. “You gave me an incorrect number. You said her heart rate is 32? Is the machine working properly?”
She returned and took my wife’s pulse manually. “It’s 45,” she announced. Again, she turned to leave.
“Could you please ask our nurse to come into the room,” I requested calmly, so as not to alarm my wife. My wife’s pulse rate under normal conditions is high, typically in the mid-to-upper 70’s. Being in the 30’s or even the 40’s was cause for alarm.
She didn’t move quickly enough for my liking. I strode past her and turned the corner. Once out of eyesight I raced to the nurses’ station and interrupted the nurse assigned to our room. She was debriefing the attending physician prior to beginning his rounds. I apologized for the intrusion and explained my concern. They followed me and went straight to my wife.
Thus began a day I will never forget. My wife had received her sixth cycle of chemotherapy for a leiomyosarcoma, a 4-hour dose of methotrexate administered via an IV-drip into her port the previous night. Up to that moment, no unusual symptoms appeared.
My caregiver role began and ended at that moment. It commenced by my alerting the doctor and nurse that I was gravely concerned about my wife’s medical condition. It ended as soon as the medical teams descended upon our room.
To use a sports vernacular, I was “benched.” I was immediately transitioned from caregiver to spectator. As anyone who has ever attended a sporting event in which they are loyal to the home team can attest, a spectator, or fan, can yell, scream, cheer and even insult. Much as they may beg to differ, they have no bearing on the final outcome of the game. In other words, they are powerless.
And so was I. Worse, I was alone. I was ignored. I was invisible.
A crash cart suddenly appeared in our doorway.
“Would someone please tell me what’s going on here? Why is this happening?” I inquired to no one individual in particular.
I didn’t want to bother the medical team, but as low as my wife’s pulse was at that moment, mine was definitely heading in the direct opposite direction. Externally, I remained calm. Internally…Jell-O!
“We need to move your wife to the cardiac care floor, the nurse informed me. “Pack your things. We’ll be going as soon as transportation arrives.”
I obeyed. I didn’t exactly feel useful, but I felt, in some small way, engaged in the process. Someone had acknowledged me. Someone gave me direction.
The doctors, three of them, exhibited a calm demeanor. This comforted me to some extent.
I wish someone would look my way and reassure me; talk to me, provide a morsel of encouragement, I thought to myself. Nothing came, not a nod, a wink, a slight smile or even a glance in my direction. I guess I was invisible after all.
Finally, the nurse spoke. “We’re taking your wife now. You can go with us if you’re all packed.”
“Can you tell me anything?” I begged. Nobody, including the nurse responded.
I understood. I felt like a child in a room full of adults. Caregivers and children are to be seen and not heard. The memories came flooding back. I knew my place. My wife is their only focus, as it should be. Again, I remained composed on the outside, but I was combusting internally as we passed another waiting crash cart in the hallway just outside her newly assigned room.
Rob Harris is a seasoned/accredited Human Resources professional. He is the author of two books. The first, “We’re In This Together, A Caregiver’s Story” is scheduled for release in the Spring of 2012. The sequel, “We’re In This Together, A Caregiver’s Guide” will follow shortly thereafter. More importantly, he is a seasoned Caregiver. His wife is a two-time cancer survivor (Non-Hodgkin’s Lymphoma and a radiation-induced leiomyosarcoma).  He and his wife are the proud parents of two U.S. Army officers. Presently, his youngest son is protecting our country’s freedom in Afghanistan after previously being stationed in Iraq. His brother recently returned from his first deployment in Afghanistan.

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