Everyday Saints and Unsung Heroes
Six years ago, this blog was first published. It has been slightly edited, but the words remain as true today as they were then.
Caregivers Sacrifice Themselves for the Good of Others
Religions call their holiest people saints. In secular speak, saints are people who are pure, honest, beyond reproach, and devote their lives to benefiting others. In our more common vernacular, we call those who sacrifice themselves for the good of others heroes.
I have decided that my grandfather was either a saint or a hero. I have only come to that opinion recently, long after he has passed.
My grandmother had multiple sclerosis. She was in constant pain. Sometimes, it was severe enough that she would scream and wish aloud that she could die.
Grandma could not move from one position in a chair to another without assistance. From the time I remember, she sat frozen with her knees at a right angle to her hips. Her 90-pound frame – which looked like a skeleton – had to be carried from the living room chair to the toilet to the kitchen table to the bed. In bed, she had to lie on her side, because her legs had developed permanent contractures, preventing her from resting in any other position.
During the 18 years of my childhood and youth, my grandfather rarely left my grandmother’s side except to work in the fields. He was a farmer. I never recall my grandfather speaking negatively to her or expressing anger at her dependence, nor did he ever ask anyone else in the family to help care for her.
My Grandfather Was Our Family’s Hero
Today, we would call my grandfather a “caregiver,” but that strikes me as too clinical. His level of generosity requires a higher level of attribution. Saint or hero – take your pick.
People with acute pain may receive flowers, calls, and visits from outsiders. But when the pain becomes chronic, those connections soon fade, leaving the person with pain isolated. Family and friends drift away, either because their own schedules make demands or because they don’t know how to make a meaningful contribution. The caregiver often shares this isolation. It is the daily responsibility that separates the caregiver from those who care about the ill person. Those who care may be sincere, but they are not in the foxhole.
Caregivers Are the Saints or Heroes of Our Society
The caregiver is most often an adult child, parent, or spouse. Caregivers face innumerable challenges. They deprive themselves of a normal schedule. They forgo pleasures and other responsibilities to be there for the one in need out of duty, love, or both.
The role of caregiver for a person with chronic pain is not a sprint but a marathon. People who have chronic pain may live for years, and so goes the role of the caregiver. Responsibilities are never-ending. The duties include nursing, banking, cooking, housecleaning, bill paying, and all other activities required to exist in society.
Every day in my practice, as I saw patients with chronic pain, I would also see caregivers. I was always in awe of their spirit and generosity. They, along with my grandfather, are heroes — if not saints — in our society. I am not sure I can tell the difference.
Dear Dr. Webster,
This was a great subject and I also have a story of a caregiver whom I owe much. In 2003 I was diagnosed with Hepatitis C. It turns out I had gotten through blood transfusions back in 1980 when I was in a serious accident and because of internal injuries, needed a lot of blood. By the time I was diagnosed, my liver was pretty well shot. I had stage 4 cirrhosis and although I attempted treatment with interferon/RIBA twice, both times failed. The virus continued to damage my liver over the next five years. I began to get very sick and lost my job. I began to get extreme bouts of encephalopathy and needed to get drained of excess fluid regularly. I needed blood transfusions at times and was hospitalized many times for infections and so forth. I needed a liver transplant badly, but my MELD score wasn’t high enough for our region, so it was a waiting game. Through it all, there was one person who stuck by my side. Whenever I needed to go to the doctor or the hospital, she was there for me. This was my wife. I would never have gotten a transplant if it wasn’t for her. There are so many hoops you have to jump through during the transplant process, and I could never have taken care of them all. I was unable to drive, cook, wash my clothes. We live in Hawaii and had to travel to California to get evaluated and by that time I was so sick I wasn’t sure I could even fly. But my wife led me through it all and I got a transplant in 2009.
My wife is as close to a saint as anyone gets. She is a person who cares about others and I know that if she ever needs me to take care of her, I will be there. I still have chronic pain from the surgery because I was so full of scar tissue when they went in, they had to do two more surgeries to close it all up. I have had all the issues that chronic pain patients who use narcotic medications go through, but my wife has stayed with me through it all and I will always be thankful for that.
There are other true hero’s in my story. They are the doctors who saved my life. They stood by me with their skill and knowledge and I would not be here if it wasn’t for them. I also cannot forget the many nurses who were there for me. They are also caregiver hero’s.