I work at remembering my thoughts which come mainly in fully formed images packed with much information and easily forgotten, by adding text to the mind pictures to help me remember them so I can write about them the next day, as I am doing now.
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Last night I finished reading Aliceheimer's: Alzheimer's Through the Looking Glass by Dana Walrath, a series of short readings about Alice, her mom, on Alice's journey with Alzheimer's. Some of the readings were sad, some uplifting, some insightful, some just were.
Obviously reading the book made me think about Gregory and the many adventures on our 12-year journey with Alzheimer's. The memories are stronger and the grief returns for a holiday visit and at other special times: Christmas, Valentine's Day, Birthdays, etc.
Some of the readings had to do with how Dana handled Alice's hallucination, being lost in time, not remembering losses, verbal repetition, losing parts of identity, etc.
Dana has very good insight into why these lapses occur, what they might mean, and how to handle them during interactions with her mom. I wish I had read her work while Gregory was still here, it would have helped.
I got to thinking that to the person living with Dementia, what they are experiencing is REAL. To us, often, what they are experiencing is the results of the progression of the disease, the breakdown of the brain, the loss of cognitive ability. We forget the person!
To us, they are living in the past, hallucinating, processing differently, etc. We know that what they are experiencing is not REAL but only perceived, we try to keep them safe, to assuage, to convince, to explain, to help them understand, to correct. We forget the person!
To us, their experiences are obviously a bit of "crazy," (sorry for the pejorative but sometimes that is how the behaviors present themselves especially towards the end stages of the disease.)
But back to the person with the diagnosis, WHAT THEY ARE EXPERIENCING IS REAL and no matter what we think, to them it is REAL! How difficult must that be for them? We often do not stop to think about the person diagnosed and what they are going through, we only think about our own attempt at maintaining the situation and "caring" for them.
What triggers a behavior might not be real anymore, but the behavior and the experience are real. When thought of in that way, it feels so painful to me that often there is little we can do except distract, hold a hand, assure, and possibly for a moment or two alleviate the confusion, frustration, fear, pain, etc.
But there is more that can be done. Be creative. One can attempt to understand the NEW trigger and if possible acknowledge it. If she sees dad (long dead,) treat that as though it is real. Ask, "How is he?"
If she sees monsters outside the window when it gets dark out, lower the shades before it gets dark and if you forget, pretend to "disappear" the monsters with a "magic stick" or "monster eradicator" poised as a pencil eraser and certainly "protect her" rather than trying to change her perception. "I am here to save you, Mom," will get you further than "Mom, there is no one out there!"
If she asks the same question over and over again, answer it over and over again. It is the least you can do. XXX wrote down the answer and handed it to her mom. Next time mom asked the same question, XXX referred to the written answer. Repetition of asking slowed down because mom was able to hold the answer in her hand. Be creative!
Be her mother is she thinks you are, let it be right after World War Two if she thinks it is, congratulate her on winning the beauty contest if she thinks she did. Telling a lie is OK sometimes!
Observe her behaviors and see if they might be pointing to other needs like thirst, hunger, needing to go to the bathroom which, for example, might be expressed by talking a lot about ocean voyages or how hot she feels, farms and animals, and stinky situations.
Above all, don't fight it, if it doesn't matter! Pretend that the REAL is real and chances are both you and the person you love will be better able to cope with whatever comes up.
If all you can do is to alleviate the confusion, frustration, fear, pain, etc. for a few moments, at least those few moments were free of confusion, frustration, fear, pain, etc.
So be it!