A Personal Journey to Becoming a Long-term Care Giver – Part I
My story of being a long-term care giver actually started when I was just a young boy. My father suffered almost weekly from terrible migraine headaches. I remember coming home from school and my mother quickly telling me to be quiet, because Dad was home from work with another “bad headache.” I would find him in his bed, lights off, window curtains closed. Mom tried to keep the house extremely quiet in order to create an atmosphere where, hopefully, he could sleep through the migraine. As a little boy, these migraine episodes scared me. I remember thinking my father would die. I sometimes cried myself to sleep with worry about my dad. (Recently, I mentioned this to my siblings and discovered that they, too, experienced the same worries and nighttime crying.)
My next big step in learning how to deal with a long-term illness came when my sister suddenly became very sick during her high school years. She ended up in the hospital and was diagnosed with diabetes. I didn’t know anything about diabetes, but with this diagnosis, things immediately changed around our house. Sugar became a rare item at the breakfast and dinner table. Instead of piling spoonfuls of sugar on my Cheerios I used some type of sugar substitute. We rarely purchased soda pop but when we did it was now sugar free. Sugar filled treats became a rarity. We all were subject to a diabetic’s diet.
Our family also experienced other major illnesses during my childhood that deeply influenced me. These illnesses taught me much about life. One critical lesson I learned is that complaining really doesn’t help the situation. I don’t remember anyone complaining about my father’s migraines or my sister’s diabetes. I learned that illness happens. It was simply part of life, and as a family we supported, loved and helped each other. We remained positive and looked for something good to compensate for our challenges. I’m certain we got discouraged and distraught at times, but we weren’t allowed to wallow in discouragement for long. I credit my parents for setting this great example. They taught my siblings and me that there is so much good in the world that it’s pointless to waste your time being negative or feeling sorry for yourselves.
Fast forward to the birth of my first daughter, close to 24 years ago. My wife’s pregnancy went smoothly. There were no problems or concerns that even remotely hinted at a medical problem with our little girl. When our daughter was born, the doctors and nurses were all extremely pleased. We did notice that she had a slightly distended tummy. However, no one else seemed concerned, so we had no reason to be concerned, either. In fact, all went so well, and being a first-time dad and not really knowing what else to do, I went home to sleep that first night, which turned out to be a big mistake. The next morning, I slowly made my way back to hospital, still thinking all was fine. Upon arriving at the hospital, I discovered my wife extremely distressed and in tears. During the night, they had taken our little precious girl to the ICU. The concern over her distended tummy had rapidly increased, and other medical symptoms had arisen.
Even without a solid medical diagnosis, several surgeons wanted to operate immediately. Others suggested we wait, and we agreed with them. Over the next two weeks, we learned about the ICU, New Born ICU, Infant Special Care, scrubbing, visiting hours, nurse changes, medical assistants, gastroenterologists, pulmonologists, neonatology, medications, oxygen, blood draws and x-rays. We learned that hospital waiting rooms aren’t large enough, and their chairs aren’t really that comfortable. We learned that some hospital food is better than others. We experienced transporting a new born in an ambulance from the regular hospital ICU to where she could be placed in a specialized children’s hospital ICU (Primary Children’s Medical Center). We quickly learned that some medical personnel have better “bed-side manner” than others. We also learned that, even though doctors and nurses were caring for our baby, as her mother and father, we needed to assert ourselves into her daily care.
We observed that, while our situation was bad, others were dealing with more terrible medical conditions. We saw that, while others might not be positive, we had the ability and right to remain positive and help others look for signs of improvement. We learned that a lot of people do love our family and wanted to help, but in the middle of a medical crisis, it is difficult to know how to let others help. We learned that it is okay to be scared, but that we couldn’t let being scared paralyze us into inaction.
Miraculously it was my wife that helped steer the nurses and doctors toward the correct medical diagnosis. One morning after kissing our daughter on the forehead she asked, “Why does she taste salty? Hasn’t she already had a bath?” These two simple questions quickly led to the medical diagnosis of Cystic Fibrosis! Don’t get me wrong. The doctors and nurses were excellent, but it took the intuition of a loving mother to notice a very small symptom that led to the CF diagnosis and the subsequent proper treatment.
The lessons I learned about life and illness as a child and teenager quickly kicked in at my daughter’s birth. I became a long-term care giver. I knew that complaining or being negative would not in any way change the current medical situation. My wife and I rallied our positive attitudes and simply went to work learning about this disease, Cystic Fibrosis, and what we could do to help our daughter live a normal, healthy, positive and long life.
By Dave Rudd, father and Sr. V.P. of a software company
Dave and his wife went on to have a second daughter with CF and a third daughter who was not afflicted with the disease. In a future blog, he will tell more of the specifics of how the care that these daughters need has affected every day of their lives, what they learned, how they coped and what life has been like for them and all three of their daughters. Watch this blog for Part II of the Rudds’ care-giving saga.