This is a guest post written by a new voice and perspective on the topic of memory decline—my daughter Beth. She will write about what she experiences as a caregiver, a loving daughter, and as a woman who has excellent medical instincts. Since this is a new experiment, I would appreciate getting your feedback. Are these posts helpful and informative?
And while I have your attention, I would appreciate any suggestions you have for topics of future posts. Please contact me to submit your feedback and ideas.
Again I thank you for reading my posts, and I wish you well.
When Mom started her blog a couple years ago, she asked me if I would eventually take over if her symptoms progressed to the point where she was unable to continue. Please be assured that Mom is still able to share her story directly, but the process of writing has become somewhat harder for her than it used to be. So to start the transition before Mom’s voice fades, I will occasionally offer my perspective as part of her support team.
The support team consists of Dad, my brother and me. Dad provides most day-to-day support and care Mom might need, and we all communicate regularly about the different insights we each have based on our own proximity to Mom’s condition. We discuss new symptoms we’ve noticed, concerns regarding medications, and brainstorm long-term strategies.
One of my roles as a member of Mom’s support team has been to attend memory-related medical appointments. Mom and Dad have typically gone to each other’s doctor’s appointments and have learned how valuable is to have someone else present when there is a difficult diagnosis; and this may be even more true for someone with memory or cognitive issues.
When Mom reconfirmed her diagnosis of MCI in 2016, I was with my parents at all her appointments, including the final visit with the psychiatrist. When we were called in to the consultation room, Mom sat closest to the doctor, Dad right next to her, with me at the far end. This arrangement kept the focus on communicating directly with Mom, Dad as support, and me to listen, take notes, and interject only when absolutely necessary.
The doctor reviewed with us her reported symptoms and test results, which for the most part were not significantly different than a year earlier. He then asked Mom if she was having any problems with her long term memory.
“Not really,” Mom said. Dad was quiet.
The doctor seemed ready to move on to the next question so I interjected, “Excuse me, I have a question. How do you define long term memory? I mean, would forgetting the name of the dog you’ve had for 8 years be considered long term?”
“Yes,” the doctor confirmed, “that would be long term memory.”
Mom put her fingers to her lips in her typical gesture of thought, and said she’d forgotten about that. I mentioned a couple other examples which, once stated, Mom also remembered.
Wait, was I the only one who thought it absurd that the doctor just asked the person being seen for memory problems if she was having memory problems…and then accepted her response as accurate? Really? Wouldn’t it be a good idea to ask the other people in Mom’s life if we’d noticed anything?
I’ve replayed this conversation in my head so many times since. Here was an “expert” in his field, yet he missed a very basic aspect of memory and cognitive impairment—the patient may not be a very reliable source of information on their own symptoms.
So this brings me to a bit of advice: Bring a trusted companion or advocate to EVERY medical appointment, not just the memory related ones. Be clear on what role you want this person to play: a note-taker to record what the doctor says, an additional source of information regarding your condition, or simply as a companion. And after a recent conversation with my parents, we all agreed that I will start going to all of their appointments as well.