My blog today represents just one day in my life with Lewy Body Dementia (LBD) and my wife's life in being a care partner.
I told you when I started my website that I would share with you, the good, the bad and the ugly. Today is the ugly. I hope you can enjoy the blog today and laugh as much as Judy and I have laughed. Laughter is the best medicine for this horrific journey.
Unless a care partner is experiencing dementia themselves, there is no way possible for them to fully understand what it is like, living with dementia. They know what it is like to be a care partner. I now know what it is like to be both a care partner and now, a person with dementia (PWD). They are two entirely different roles. Both carry so much pain, but they also carry so much joy. Care partners frustrations are different than the PWD. Victory will have occurred when there is better education and understanding on how to communicate with a PWD. Unfortunately, during the years with my Mom and Dad, resources were not available and still are very limited. It is not the fault of the care partners. Our healthcare system has failed us.
We are years behind on reaching the level of understanding how to communicate and interact with a person with dementia. Teepa Snow very eloquently teaches through her training, skills that are necessary to make the lives of both the PWD and care partners, the best it can be. Her training videos are available on Amazon. Unfortunately too many families have not seen her resources. I feel that we are behind because of the stigma that has been given to dementia. Now, we are seeing PWD step forward and share their life experiences. It is time to come out of the closet and be honest, so that the lives of others might be better. I believe that better education and understanding will lead to better outcomes for both the PWD and the care partners.
Last Friday was filled with tears and laughter for both myself and my wife. We started at 7:15 AM, driving to Macon, Georgia to visit the dermatologist. Both of us had appointments. The dermatologist did a biopsy on my wife's leg and on my nose. We returned home at 10:30 AM. My wife has both systemic lupus and rheumatoid arthritis so she took a nap until 1:30 PM. Leaving the house at 2:00 PM allowed us time to drive to Fayetteville, Georgia for a 3:40 PM appointment with a gastroenterologist.
The visit with the gastroenterologist was very frustrating. In the exam room, my wife was sitting at 12 o'clock, I was sitting at 3 o'clock and the doctor was leaning against the exam table at 9 o'clock. As the physician began his exposition on his treatment plan, with a stenographer in the room, he looked directed at my wife the entire time. I raised my hand and asked if I could ask a question. He immediately said "NO, I will lose my train of thought". I reviewed the visit summary as we drove back to Thomaston. There were no answers to the questions that I would have asked. I asked myself, "who can recover better, the PWD or the physician?" I know the answer, apparently, he does not.
I followed the physicians instructions exactly as he had directed for Friday night and Saturday morning. Monday morning I began the prep for me to have a CT scan with contrast. Many years of my pharmacy career was spent in medication evaluation, side effect evaluation, lab monitoring and making suggestions to physicians for drug selection in LTC facilities.
My review of the lab results and the radiologist report did not offer any significant findings as to the symptoms, I was experiencing. I even talked to my former college roommate. who is Professor Emeritus at a major medical school. After that I talked with a thirty-five year friend who was in family practice. Neither of them could put the puzzle together. Still, the gastroenterologist had not called me.
Even amidst all of these frustrations, Judy and I have been able to share with each other, tears and laughter. Hopefully, tomorrow I will receive a call from the gastroenterologist and have a plan that will resolve my symptoms that I am experiencing.
©2015 Robert Bowles
Robert Bowles, Jr.