Sometimes, we have to educate the doctor. Twelve days ago, I visited a G.I. doctor. I had emergency surgery for a ruptured colon in December 2013 with a resulting ileostomy bag. Complications followed the ilesotomy. I went back to emergency surgery to re-connect my colon. The colon would not start back working. Medication failed to work. I went back to the G.I. Lab for another colonoscopy and this worked. One year latter, I am having more problems with my colon. I am sure the fact that I have been diagnosed with Lewy body dementia (LBD), autonomic dysfunction, multiple system atrophy, diverticulitis and irritable bowel syndrome does not help.
I visited my G.I. doctor on February 13th (that was Friday the 13th). As he began his explanation of his treatment plan, he looked the entire time at my wife and never at me. I raised my hand to ask a question. His response with inflection was, "NO, I will lose my train of thought". By the time we left, I had no idea what he had told me or what my questions were. Neither did my wife, who has systemic lupus, rheumatoid arthritis and my primary care partner. I called the office twice over the next ten days to tell them that the treatment plan was not working. I even contacted my college roommate who is Professor Emeritus at a major medical school. I contacted a friend of mine that is Assistant Professor of Clinical Pharmacy a a major pharmacy school. The pharmacy professor even told me that the medication I had been given was contraindicated with what I was experiencing.
I returned for my visit on February 23rd. When the physician came into the exam room, he had read my paper describing everything that had taken place including me contacting the physician at the major medical school and the clinical pharmacist. His immediate comment to me was, "you have too many doctors".
My physician had opened the door, and I chose to come into his world and teach him Dementia 101. I told him that I had all those doctors because he was not answering my questions. Taking a a little further, I told him the impact of his not looking at me had on my first visit. I began explaining to him that it was not time for him to read my final chapter. That chapter had not been written. I explained to him that God would write my final chapter, not him. He apologized and told me that he would talk to me in the future. He found himself glancing at my wife several times and would catch himself doing this and then apologize. He began telling me his treatment plan and told me that he was going to give a twelve day supply of an antibiotic. When he told me the name of the medication, I quickly responded, "that is going to cost about $1,000". He said, "don't worry about that, I am giving you the full twelve day treatment". I can only imagine that he must have felt bed for how he had communicated with me.
Previously, I had asked my college roommate, "when will doctors every get, how to communicate with a person with dementia". His response was, "start with the students, interns and residents....one doctor at a time"
For now, I think each of us that are living with dementia and the care partners must be diligent in improving and developing a close bond with those who are providing care for us. If we do not tell them, they will not know.
©2015 Robert Bowles
Robert Bowles, Jr.