Walk with me backwards to the first months after my diagnosis. This will sound weird but somewhere between leaving Mayo and arriving at a local neurologist, apparently my Alzheimer’s diagnosis stripped me of my ability to manage my own life. That’s the only explanation I can find for the first question the four local neurologists asked as they entered the rooms for my appointments.
Here’s the back story. I was diagnosed by a wonderful neurologist at Mayo Clinic using various neurological and neuropsychological tools (MRI, PET, etc). Because the drive between home and Mayo is four hours, I needed to find a neurologist closer to home that would prescribe Leqembi (latest infusion drug for attacking plaque). You would think this would be a simple task but I found myself on the health care merry-go-round: Beg local neurologist to take a new patient. Wait 1-2 months for the first appointment (all the while wondering “how much brain power am I losing each month”), repeat this process three more times. Each time, I was met with the question:
Who came with you today?”
It never failed to catch me off guard.
Let’s see, sir, just yesterday, I was traveling for work, living independently, cooking for myself, and sticking to my new diet and medication plan entirely on my own. Sure, over the past year, there have been moments where these things took more effort, but the thought of needing someone to accompany me to a neurologist appointment about these changes never even crossed my mind.
The polite part of me wants to believe they’re simply accustomed to ensuring Alzheimer’s patients have a caregiver present. But honestly, it felt more like a dismissal, as if my ability to recall the conversation made my input less valuable. I’ve started calling it “The Question” because it’s so consistently asked. In one instance, The Question was followed by a rapid-fire: “Who drove you here?”, “You live alone?!”, and “Is your son making plans for you to move in?”. I remember sitting there, recalling my friend Regina’s aversion to sarcasm, so I simply smiled a sweet smile and, in my most Southern, seemingly naive tone, replied, “I still drive,” “Yes, I have lived alone for most of my adult life,” and “My son and his wife are very supportive of my independence.” The fact that my rather noncommittal answers weren’t probed further confirmed my suspicion: the physician was done talking directly to me until I brought a caregiver.
I also found that finding a forward thinking, research sauvy neurologist close to home was not going to happen. Each one refused to prescribe Leqembi. I’ll save thoughts on that topic for another post.
To continue, I quickly realized that the Alzheimer’s medical staff and “industry” in my neck of the woods heavily focuses on caregivers. I don’t mean to diminish the crucial role caregivers play – I truly believe they are the backbone of the Alzheimer’s journey. However, there’s another perspective on patient care, one that perhaps is only now beginning to emerge with earlier diagnosis available.
People like me who receive a diagnosis in the earlier stages, are still capable and eager to be involved in our own treatment and life plans. I want to maintain my independence and productivity for as long as possible. I crave information that will help me make caregiving easier for my family or future facility caregivers (thus creating the Empowering Me! book). I am currently responsible enough to take notes, which I can share with my family or refer back to when my memory falters. I am capable of trying to establish routines that might simplify my eventual care. I can ensure my affairs are in order, preventing surprises for my son and daughter-in-law. I can buy sticky notes in bulk to remind myself to lock the door or turn off the stove…at least until the day I forget how to read.
I can still live independently, I can promote awareness, and I can order sticky notes in bulk from Amazon! My friend, Cathy, has told me several times a variation of “You are the most un-Alzheimer’s Alzheimer’s patient I’ve ever seen.” It makes me strive to prove her right continuously (and I’m grateful to her for that push).
So enough of that topic for today. Thanks for reading and supporting my journey.
Teresa
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