I’ve come up with FIVE gerunds that describe how I’m dealing with this journey. (Finding and owning, asking and using, educating and reading, identifying and meeting, and finding again. More on each of these as time goes on).
I’m enjoying “Educating” or its fuller title, “Educating myself to this insidious and still somewhat mysterious disease.” Indeed, I’m excited to be learning something new, something important, something that has pulled some very creative and caring people into my life. These next few posts will share some of what I’m learning.
As I read the myriad publications available for dementia caregivers, I’m struck by how many important words begin with A, beyond the obvious Alzheimer’s itself. Perhaps I’m being silly, but I enjoy alliteration. So, let’s take a look at each one. I’m most taken by the last one, anosognosia. It took me three months to learn how to pronounce it, and another two months to get the spelling right. (I’d been doing Ana Sognosia, like it was a person.)
First are three A’s that I am lucky to have had little experience with (yet):
Agitation, Anger, and Aggression There are many stories of personality changes with any dementia diagnosis. And while I’ve noticed Woody gets frustrated more easily, he’s not yet been angry or agitated with me. The same with aggression. If anger is the emotion, aggression is the behavior that follows and I’m grateful.
Then, there are five that I do have experience with:
Ambivalence Of course it’s hard for him to make a decision and menus are a particular challenge. I notice he tends to order a BLT whenever we’re out for lunch, no matter the season.
Anxiety arises when I go away. He won’t complain, but I can tell how relieved he feels when I return.
Apathy is the saddest one for me. Apathy is not depression, though to see him while away his time in the same seat, with the same crossword puzzle book, on the same page, for hours on end, might have once gotten me depressed. He moves when I suggest something, in fact, he does most anything I suggest, including vacuuming and cleaning the bathroom — there are upsides to this disease, I remind myself — but he rarely initiates an activity on his own.
Appetite His appetite was much diminished for many months and he quite obviously was not enjoying food as much as he once did. The psychiatric nurse practitioner that he sees monthly suggested we enjoy a non-alcoholic beer each day, which has become an afternoon ritual for us, a time to stop, sit together, and check in. Beer, the story goes, is an appetite enhancer. And that seems to be the case.
It’s this last A that has me truly intrigued. It has also given me my biggest challenge on this journey.
Anosognosia was a new word for me. I had to look it up. Here’s the definition from the Cleveland Clinic:
Anosognosia is a condition where you can’t recognize other health conditions or problems that you have. Experts commonly describe it as “denial of deficit” or “lack of insight.” It falls under the family of agnosias, all of which happen when your brain can’t recognize or process what your senses tell it.
Or, as I like to put it, “You don’t update your self-image.”
What this generally means for caregivers, and certainly for me, is that we can’t face this challenge together. To Woody, any memory issues he notices are merely a matter of growing older. There is, for him, really nothing wrong. He’s still the absent minded professor he’s always been.
I tread carefully. And I grieve that loss, often.
Up Next: I’m thinking I’ll share the letter I’ve written to those who accept my invitation to come and visit with Woody while I’m away. In the beginning, I realized he defers to me if I’m present. So, I excuse myself after a few moments. It’s a letter that offers suggestions on how to make the visit enjoyable for both.
How about you? My first husband died of Alzheimer’s this past February. Besides Woody, my cousin Paul has had it for some time. It seems that each time I meet someone who learns of Woody’s diagnosis, I hear of yet one or two others so diagnosed. How many people with dementia do you know?
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