During the days following my new diagnosis, the word dementia swirled around in my mind like a brewing thunderstorm—dark, threatening clouds looming, winds toppling my inner landscape. I was fearful of the approaching devastation, knowing I have little power to stop the oncoming storm.
I can’t count how many times during those first few days after my initial diagnosis (and even now), the word dementia intrudes into my thoughts, causing my stomach to swirl, or my head to ache, or having to pause to wipe tears from my eyes. Yes, I realized after my new diagnosis I was depressed and needed professional help. So I called my psychiatrist at Mayo and asked for a referral for someone to help me deal with my anxiety.
I am now seeing a wonderful, wise and experienced therapist. Her name is Christine and she is very well versed in dealing with clients who are experiencing memory loss. She is seasoned, asks meaningful questions, and offers insights and concrete ideas and suggestions to help re-frame my thinking and calm my fears and stress.
Nevertheless, the word dementia still sends chills up my spine. It is ever present in my thoughts, and even during the night as I stir half awake, the foul word seeps into my mind like dark, dense sludge. I want to deny it and scream the docs are wrong, the tests are wrong. This is just a horrifically bad dream.
As I calm some, I’m reminded that during my last MCI Research Testing Session at Mayo, I abruptly stopped a portion of my testing that dealt with word recall; firming declaring—“I’m done! I can’t do this anymore.” And did similar when asked to copy three dimensional drawings. I put my pencil down and said “I want to be done.”
I know both my memory and cognition continue to decline. But similar to when I was initially diagnosed with MCI, I feel defiant and even angry that anyone has the audacity to label me as having dementia.
However, I cannot deny I have declined. I ask Keith more and more often the same question within minutes of him already answering. I forget names and past events and get lost reading a book if I put it down for a day.
In spite of my frustration and sometimes anger, I appreciate that the medical community is capable of naming and determining both physical and mental stages of health, which then leads to ways and means to treat people effectively and wisely.
I’m trying my best to remind myself that just because my condition has a new name, I’m pretty much the same today as I was yesterday. I’m reminding myself dementia is only a label for a condition that comprises many facets, manifestations, and stages. Look! I’m still writing pretty darn well! I’m able to do my own self-care and grooming, coordinate my clothing, make bread and simple meals, stay at home alone while highly conscious of not doing something that could be considered dangerous.
Most importantly, I try to remember a label is just a word someone assigned to a set of vastly changing conditions and varying degrees of progression. Dementia doesn’t account for my every mood, or that I am still capable of experiencing loving and in turn being loved. Or that I can still laugh, tease, enjoy a rainstorm, or take a walk with my dog. Dementia doesn’t demand I have to stop writing or singing or sighing at the wondrous beauty of the fall colors reflected in the Mississippi River, or alter my enjoyment of listening to beautiful music, or reading poetry, or being awed by art.
On my best days I can remember that dementia is only a word, but it is certainly not the last word.