I feel anger as I watch the nurse's aide assist the patient into his bed from the wheelchair. The patient arrives in the step-down unit after an esophagectomy with multiple drains and tubes and two large surgical incisions. The aide does not introduce herself, make eye contact, or speak to her patient; rather, she jostles him, bumping the NG tube bridled in his nose. He grimaces and glares at her. I speak up. I am an RN, a patient advocate. I state my name, who I am, and then assist the aide to gently change the telemetry leads and settle the patient. This is the patient's first surgery and hospital admission. The nurse's aide does not know his history, but I do. I am a nurse, but not on this unit. This patient is my father, and I am on the other side of the nurse–patient equation.
Word moves quickly that a patient on the unit has a daughter who is an RN. It does not take long for staff entering my father's room to introduce themselves, use hand hygiene, and explain his plan of care without prompting. I sense some caregivers are perfectly confident under the scrutiny of my constant vigilance, while others retreat into an uncomfortable, defensive mode. I wonder if they understand my frustration and feelings of helplessness as I watch my father struggle in his recovery. I am an outsider, a family member on the other side. I know there is information not shared with me, information the health care team keeps to themselves. These conversations take place in whispered voices outside the room—conversations I have been a part of in the recent past, on my unit.
We have been in the hospital nine days longer than originally planned because of a surgical complication, followed by still more complications. I say “we” because on most days I've only left my father's room for a quick shower and brief nap at the hotel. I have become one of those demanding family members who never leaves. Nevertheless, I do not feel my demands are unrealistic. I want updates, I want exceptional care for my father, I want him to heal, and I want to take him home.
Although an outsider, I am not alone in this—these are the same demands any family member would make for their loved one. As the IV pump alarm sounds, I jump out of my chair to silence it, and then remember I cannot do this. I sigh, hit the call light, and we wait and wait. I look at the clock: 19:07, change of shift. I reluctantly leave the room and approach the nurses’ station. I tell the nurse that the IV fluid needs to be replaced, and I can see the flash of irritation cross his face before he conceals it. I understand, as I have been in this position myself at the end of a long 12-hour shift. Tonight, I do not care that it is change of shift; I want the alarm to stop because my father does not like to listen to it.
It has been 35 days since the original surgery. My father has suffered every complication possible during his hospital stay. He is finally stable enough to go home. A new diagnosis of pulmonary fibrosis requires the use of oxygen. I listen politely as the nurse explains the discharge process and educates us on his home care needs, demonstrating how to give an enoxaparin injection. I am exhausted. I have struggled for weeks with the effort of trying to be just his daughter and not his nurse. It has been impossible. My father and family look to me for information and guidance.
I question myself daily, racked with self-doubt: did I ask the right questions and push for the right treatments? Was surgery the right choice? My father was quiet and confident, physically strong, a man of action. He was my hero, and he walked into this hospital with me by his side. I now see an anxious, frail, emotionally scarred man in a wheelchair, with me behind, steering. He will never be the same again, nor will I. I encouraged him to have the surgery; I, his daughter and a critical care nurse with many years’ experience, told him everything would be okay. He trusted me.
My trip to the other side was life changing. Over the past several weeks, I have experienced optimism, anger, frustration, disbelief, fear and doubt, defeat, and yes, even joy, albeit brief. Emotions that many patients and family members feel with each hospital visit. Emotions I was not fully aware of until I was on the other side.