Why the Doctor Sometimes Talks to the Caregiver Instead of the Patient

My husband (85) is the dementia

patient. I always bring to a doctor's visit a printed copy of his medications and at the bottom part of the sheet I write a description of the effectiveness of the meds as well as the changes I observe in his condition and behavior. My husband thinks I am just giving her a list of medications but the extra comments give her a base for questioning him and observing his responses.

Family members who believe that

a dementia person can have a meaningful exhange with a medical professional are in denial. They obviously need more information about what can be expected from a demented brain. I am 5 years into caring for my 61 y/o AD wife and at the last MD visit the 'nurse' asked my wife her height. I stood quietly and waited. My wife said nothing. Then I reminder the nurse that she had just asked an AD person to remember something . . . . .Embarased the nurse then (correctly) directed the questions to me. In the exam room I do all the talking. Besides the AD, her aphasia makes any conversation meaningless. There is too much confusion in managing this disease. Do not make things worse by expecting your AD person to convey correct information to the doctor. IT AINT GONNA HAPPEN and is a waste of everybody's time! Would anybody tell a pediatrician that they should direct their questions to a baby? NO! Then why would you ask a dementia person anything and EXPECT a factual, signifigant answer. I have become the 'parent' to my wife. (yes, it sucks) You have experienced role reversal and are now the parent to your mother, get used to it. Treat the AD person with respect? Sure. Try to acknowledge their humanity? Of course! But when an accurate exchange of information to modify or adjust a treatment plan is necessary, leave them out it it. The caregiver in in charge.

If, as I gathered from your question,

your mother is still quite mentally capable of answering questions, then I would suggest what I do might work for you. I generally sit behind my mom at her visits. When I find the doctor making eye contact with me and "talking" to me, I will frown slightly, shake my head, and point to my mom. I have yet to meet a doctor that doesn't get the message. The eye contact switches to my mom, and the conversation returns to her. If I have something to contribute, I just jump in and insert my observation. I do have to do this, not so much for mental issues, but because my mom, now 89, is a registered nurse trained in the period where doctors were GOD and noone, especially nurses DID NOT QUESTION THEM. I am also a registered nurse and I have NO FEAR of questioning the doctor. We make a pretty good team.

I cared for my now 88 year old

MIL with Alzheimer for nearly 5 years. During those years of many different doctors and styles, I found one important way of helping all of us during a visit. Before her appointment I wrote up a report: 1. her name, contact info; 2. last visit date with weight, BP HR; 3. meds OTC and prescription, pharmacy name and number, dosage time of day taken, refill info etc.); 4. any injections such as flu; 5. changes since her last visit; 6. any other Dr. visits (name, contact info., and what prompted the visit); 7. questions and concerns; 8. our names and contact into. This helped her because she could not answer correctly (and was in denial throughout the disease) and would become anxious before, during and after the appointment. The Dr. had the opportunity to review this previous to the appointment since I had emailed it to the office. She became more relaxed at visits when I explained that the Dr. had all the info he needed and that we were just there for medication renewals and a visit. We no longer had to discuss what upset her (such as her alcohol consumption). The Dr. could then spend more of the office visit addressing her (and evaluating her responses) since he already had my input.. The nurse already had the info she needed so she only had to do the usual weight, BP, HR etc. This was an ongoing file on my computer that then became part of emails to any interested family members. My MIL (who is in moderate late stage) has moved into a nursing home recently and is doing well. We are all grateful for this site and all the info/support we get from it. Bless all of you and don't forget to take care of yourself or there will be no one to take care of your loved one. Keep reinventing the wheel everyone.