LIVE LIFE TO THE FULLEST
LIKE NEVER BEFORE
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
Paulan Gordon at https://www.dementiamentors.org/ on 02/26/2015 2:03pm Way to go Robert! Give them hell! Get more doctors so you can straighten them out also. You know my experience has also been awful with my two neurologists. I’ve given up on them and seek help from my psychiatrist. If neurologists in our society are supposed to treat people with dementia then they should either go through special training to treat people with dementia or we need a new type of doctor to treat people with dementia, maybe a dementiaologist!
Robert Bowles on 02/26/2015 6:40pm Paulan, we the patient must continue to educate the doctors. Most doctors probably have never been directly affected by anyone in their family having dementia. By the time there is someone, they are just about too old to practice
Diana Winoker on 02/26/2015 8:09pm I agree 100% with your comments. As a person suffering from bvFTD and other medical problems, I have started a one woman’s campaign to educate as many medical personnel as possible.Some of my doctors are at university medical centers which means interns and fellows like to try and play super doc with me.When they walk in and call me Diana, I immediately ask is their first name Tom, Dick, Jane or whatever their name tag or jacket says.Most respond, my name is Dr.So and So.I respond back then I am Ms.Winoker.I also tell them I want to know something about them, ie.2nd year resident are they staying in town after they finish their fellowship etc.My justification is I’m not answering personal questions about me and my FTD without feeling comfortable how I am perceived by them.Most of these young doctors could be my children (I am only 62 years old) and I expect some respect from them.The other assumption that many doctors make about us (FTD) is that we have lost our intelligence since we have FTD. Very far from the truth as you know. I don’t have a caretaker because I have no family and I’m single.I am still driving and functioning well.My goal is to educate as many people as possible about FTD. We are not the stereotyped dementia picture and the medical world needs to wake up and learn.
((Originally posted 2015 February 26 at lbdlivingbeyonddiagnosis))
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