Unwanted Support: How to Handle Your Loved One's Doctor's Appointments
Health Guide May 17, 2006
Visits to the doctor’s office with a patient with Alzheimer’s disease can be like a three-ring circus; you don’t know which circus performer will come dressed as your loved one once you reach the center ring. Will your loved one do a verbal somersault in order to hide the memory loss or offer cotton candy to tempt the medical professional to determine that all is OK?
Before she was diagnosed with dementia, but was already suffering from short-term memory loss, Mom forbid family members to even join her to see the doctor. She was paranoid about everything and almost everyone at that point and would lash out like a Bengal tiger that had been prodded too much. Because of the paranoia, she would not allow my father to go into the appointment with her; however, this decision proved to be a double-sided sword since she would promptly forget everything that the doctor told her. When we would ask her what the doctor had said, she would recall a conversation that indicated she was doing great, and then snap at us if we didn’t believe her.
So our family members had to figure out how to tame this angry tiger. I started by being available to join my mother when she had an appointment with her pulmonologist in Austin. Because Mom wasn’t paranoid about me, she would let me go with her into the doctor’s office. Eventually, my dad was able to join.
We also would ask Dr. Deaton to provide duplicates of his recommendations so that we each had a copy. I broached this idea with my mom prior to the visit, noting that she would have a copy but Dad and I also would be able to help her if she forgot any critical item. She agreed. This proved important since many of her primary care physicians were in West Texas and did not know Dr. Deaton.
Another challenge became to get her to allow Dad to attend her other doctor’s appointments when they returned to West Texas. Sometimes she grudgingly gave him the green light; other times, he waited for her in the reception area.
The consequences of Mom’s health care House of Mirrors was that her health came crashing down at her last appointment with Dr. Deaton last September. As we settled into the examination room, the nurse came to check my mom’s vital signs. Watching the nurse, I noticed the grimace as she reported that my mom’s blood pressure level was 80/40. Shortly thereafter, Dr. Deaton recommended that Mom consider moving into assisted living and stop driving. At that point, I knew we had reached a crisis point; yet an hour later, my mom reported that her revered doctor had said she was doing great and she didn’t remember the conversation about assisted living or driving. Three weeks later, my mom had an official diagnosis of Alzheimer’s disease.
The lessons that my mom’s medical history illustrate are numerous. Here are the ones that are most evident and could be most helpful to caregivers:
1. Your loved one wants to be in charge of their health as long as they can. My mom consistently said, “It’s my doctor and my appointment” in denying my father access to the meeting. She dug her heels in when my dad tried to take over managing her care. I had a better time gaining her trust by trying to position myself as a partner (instead of the overseer) of her health.
2. Get the doctor to write everything down and then duplicate it. This proved to be helpful so that Mom had her copy while we had a copy for our files. Dad also could share this information with the other doctors that Mom used.
3. Make sure the doctor talks to your loved one who has dementia instead of only talking to your family. In one case after her diagnosis, Mom, who was disoriented at the time, still became very irritated that the doctor (who knew she had Alzheimer’s) told all his recommendations to me instead of her. She wanted to feel like she had some control over her health.
Doctors are a critical member of the support structure that you’ll need in caring for someone with Alzheimer’s. To be successful, you may need to figure out how to become an accepted partner in your loved one’s medical health, develop processes so that you and all attending doctors can stay in the loop, and provide your loved one with the impression of control for as long as possible. By taking a team approach, your loved one may give you a place inside that proverbial Big Tent. As a partner, you’ll be able to help manage the twists that Alzheimer’s will throw in the path and can provide the safety net that may be needed for your loved one.