My spouse, L, and I live in Texas. L is a "Cancer Warrior" who is living with Stage IV Ureteral Cancer with metastasis to the liver. L has been a patient, since her diagnosis in April 2018, at Houston's world-renown MD Anderson Cancer Center (Sacred Heart is one of 18 MDA Certified Network Partners in the world). L completed her 17th infusion and on the following day, we flew to Pensacola to attend the funeral of L's mother, who died at the age of 92.
During the service, L begin to demonstrate early signs of a stroke which we believed were due to emotional stress and dehydration. When the symptoms didn't abate, I brought L to Sacred Heart's emergency room. Her clot in the carotid was removed and L was sent to a beautifully equipped ICU unit.
When we were moved again, we met, Faye "The Angel". Our day nurse was Faye. She oriented us to the wing and promptly began providing professional and compassionate care. L's family, who was checking in on us, uniformly were wowed by Faye. The result was she received the nickname "The Angel" from the family. While we were there, in my eyes, she earned her wings.
During the early morning hours, I realized that L's stroke may impact her continued participation in her Phase II Clinical Trial at MDA which had reduced or eliminated 2 of her 4 lesions. The stroke could also impact her future participation in a Phase I Trial that she had been recently accepted. Only 15% of potential patients antigen on their tumor surface to participate in the trial. This Trial's purpose is examining TCAR (genetically engineered T-Cells) effectiveness on solid tumors. Suddenly L's Option A and Option B cancer treatment plans were in jeopardy and the prognosis that L would live just 5 to 7 months without treatment was a reality (one of the reasons L's is in palliative care at MDA).
Finally, I realized I didn't have a clue about after stroke care or even how to get L back to Texas. I was overwhelmed, overloaded, out-of-control, and consumed with self-doubt about my ability to advocate for my spouse. I was an emotional basket case who was silently screaming so as not to wake L and crying continuously until the shift change at 7:00 am.
Shift Changed - Wings Earned. After the patient hand-off, Faye came back into the room while I was still crying and asked if there was anything she could do for me....not her patient, but rather the patient's caregiver. Being the macho Texas cowboy, I said no and said it fairly emphatically. Faye left the room and I continued to be drowned by my self-doubt.
What I didn't know, that despite my declining her assistance, Faye decided to call in the troops and earn her wings. All of whom helped to break my "insurmountable" problems into smaller more solvable action items and then helped lift the load. I can't describe the weight that fell from my shoulders and from my soul. All because Faye decided, on her own initiative, to treat the "whole" patient which includes the caregiver.
Nationally if a person is providing care to an elder who is 65 years or older, they are, on average, 63 years old themselves and caring for a spouse. This profile fits me to a "T".
As a caregiver, I can say that my experience mirrors the national research that we "get very little help from health care professionals in managing our tasks and among the greatest challenges for caregivers is interacting with nurses and other professionals in the hospital setting." This is not intended as a criticism, because I want the nurses to focus on the care of my patient. But how did Faye know to treat the whole patient? Was it training, was it experience, was it instinct, or was it empathy? Frankly I don't know and I don't care. All I know is Faye saw someone in crisis and responded.
Did Faye's training at UWF or Sacred Heart teach her about the Family Caregiver model summarized in the acronym COPE (Creativity, Optimism, Planning, and Expert information)? Or was it her nursing experience? All I know is that the interventions Faye triggered helped make this caregiver more competent and confident, and the end result was our patient, my wife, was provided more effective care than what would have been provided if Faye had just done her job and treated the patient in a professional, caring manner.
The Sacred Heart Hospital Experience. L and I have experienced empathic, compassionate, professional care nurses, in the state of the art facilities at Sacred Heart Hospital. But it is Faye who provided care to the whole patient.
My wife, my wife's family, and I deeply appreciate the care and compassion shown by Faye during L's event. Faye made a difference and epitomizes the essence of The DAISY Award.