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.
