I’ve come up with FIVE gerunds that describe how I’m dealing with this journey. (owning my emotions in the moment, surrounding myself in support, educating myself to this insidious and still somewhat mysterious disease, identifying the challenges I face, and finding joy in the midst of this unexpected journey. More on each of these as time goes on).
I’m enjoying the “Educating” one currently. 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. (Alois Alzheimer identified “plaques and tangles” over 100 years ago in patients who had died of “presenile dementia.” The disease is named after him).
I enjoy alliteration. So, let’s take a look at each one.
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. If anger is the emotion, aggression is the behavior that follows and I’m grateful I’ve not met with those, yet.
Then, there are six 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.
Appearance Yes, I remind him it’s time to shower, I choose the clothes he’s to wear if we go out, and I decide what goes in the hamper and what need not.
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. Then, 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.)
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 can’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.
There are more: advanced directives, ambiguous loss, anticipatory grief, and activities of daily living.
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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