Saturday, September 12, 2020

Dementia: How Do We Know Thee....Let Me Count The Ways...

Ideas and relationships of actions come to me at the oddest times and in the strangest ways. Today it was seeing an announcement of Robin Williams and his journey through Lewy Body Dementia.

We went on the Lewy Journey...it was longer than we realized, not just recognizing the disease but living with it far in advance of realizing IT was a part of Mom's life and ours. 

We lived together every day for almost forty years and did not see it; took Mom to Dr's for various reasons and NO ONE saw it.

Lewy Body Dementia is an amazing chameleon like affliction. Thought about writing "disease" but we think of a disease as something we "catch". 

Reading a book, thinking about a family member, seeing pictures of an event.....each can cause thoughts about what could seem to be unrelated but spring into mind showing a direct connection with one another.

A few minutes ago I was thinking about my cousin who has early onset Dementia; not been told what form but another relative thinks it's Alzheimers. 

From spending time with her, I see and hear more memory "adjustment" than we experienced with Mom and her Lewy Body Dementia.

But then, MY brain asks, are we so sure we understand and can accurately categorize this "experience" of Dementia or will we look back on these times and those that went before as the "dark ages" of Dementia.

What came to mind was a photograph record...it's round....it brings music and words from the disc to our ears via a phonograph....Thomas Alva Edison...

We don't think about the person who went before Edison and who invented a "phonograph" that made a recording of sound waves on a glass plate but was unable to play back the sounds; he patented it on March 25 1857.

It took two specific pieces to create the ability to take what was "on" one piece to make it "come off" another yet still remain "embedded" in the original.

EUREKA! My mind said. I thought about my last visit with my cousin. We picked her up from her fairly new "home", an Assisted Living with Memory Care and took her to a party for one of her two daughters.

TRIGGERS.  Our mind receives (if all are working correctly) visual, audio, tactile and smell inputs and often finds relationships between these "senses" to what's occurring currently or has occurred in the past.

For my cousin with Dementia, the "recording" is playing and the "triggers" of sense interplay are working but the "timing" or where in time and space she is at the moment are not registering accurately.

To someone I would tell about our "experience", unless they had the same knowledge of Dementia as I do, they would simply see more evidence of my cousin's "Dementia" and how she was "really losing it".

What happened? Several times my cousin mentioned a Cousin we'd both spent significant amounts of time with when we were much younger. Joyce had an aneurysm at a very young age and passed suddenly in her sleep. 


To Karen, who was "here" and "now" physically and receiving stimulus by actions and activities, her brain was doing what would have been "normal" had it not been for Joyce's no longer being alive.

Karen made statements and asked questions and I believe somewhere deep inside her memories is the memory of Joyce having passed through this life but it wasn't "accessible" and she didn't have the ability to get to the information.

DEMENTIA IS A DISABILITY.  It limits but does not always remove capability and certainly not in all areas at the same time or at the same level.

DEMENTIA has been referred to as a "thief" but I've come to know it as an affliction of many types and varying levels that are not always consistent or visible.

TRIGGERS.  For Karen it was the two of us "cousins" being together and going to a family celebration.

Joyce would have been there if she could; we'd shared many memories together and to Karen we were the "slightly" older cousins who were "at that age" so envied by the ones who are five or more years younger. And Karen had actually spent more time in life with Joyce in our "grown up" life while my relationship with her was more from youth through early teens.

When you see all the pieces of the puzzle of Dementia and know where each part goes in a specific scenario you can relate to the person's challenge which is simply like having a short in a wiring system or a misconnect in time and place. 

So when we walked out the door and she asked where we were going and I told her we were taking her to her daughter's birthday party, Karen said she hoped Joyce would be there. 

Getting settled in the car, Karen said it had been a long time since she'd seen Joyce.

My interaction with friends, relatives and acquaintances with thought processing challenges has taught me to listen, not to correct, not to move forward into questioning or denial of what is said.


Karen asked if I thought Joyce might be coming to the party. She wondered when she would see her again if she wasn't. 

Karen smiled, she laughed and I could see her thoughts were of positive and enjoyable times. 

What difference did it make if she was "factual" and "accurate" and TOLD how things "really were"? None. 


There was no need to put a tailspin into her life and possibly affect the "NEW" experiences and possible memories, albeit for how long and in what way we could not say.

Instead I said I hadn't see Joyce in a very long time and I missed her, too.  

When Karen made this subject into a conversation, I simply took her "lead" without turning a sharp corner into areas where she could not go or would or could upset her because she could "experience" the pain we felt when we learned of Joyce's early and unexpected death.

Yes, the brain stores those hard, harsh and challenging memories along with the joys and celebrations and great events we go through.

Like that record and the phonograph, one without the other serves no real purpose, put them together and you have an "experience" and even, possibly, the recurrence of old memories or the making of new.

It's not lying to a person nor is is supporting "fabrications" or "untruths" as their journey is alongside us but there's a separation we cannot remove or sometimes adjust the covering or the level of light or darkness.

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