What Mom's Lewy Body Dementia Taught Me: #2

It has been a while.

During this time I needed to ponder, mull, muse, think, and consider all that has happened.

So, here’s what I can add at this time:

Early Signs of Lewy Body Dementia aren’t really visible unless you are vigilant.

This doesn’t mean you keep someone under constant supervision, but you learn, you observe, you begin keeping a journal and look for the signs.

With Mom, the signs weren’t that obvious.  We thought it was just the regular aging process, but in reading her journals I was hit with some realizations that made me begin to see what I didn’t see:

1. Her handwriting began to deteriorate.  She had a good style of writing - sometimes it was a bit difficult to decipher, but one could usually understand it - crisp and clean.  Artistic, in a polished way.    However, between 2000 and 2003, her writing began to lose its balance - she didn’t stay on the lines, the writing began to appear more fractured and frantic (much the way our grandmother began to write when she was in the early stages of Alzheimer’s).  The progression went in and out until it seemed rather regular - but in comparing the styles, it was obvious something was amiss.

2. Her sense of balance began to drift.  Mom began having accidents - she fell several times after 2002, once scraping her face, other times just plain losing balance.  Her journals indicated her unsteadiness and her fears - but she wasn’t long-winded about them - perhaps because she didn’t really want to acknowledge them any more than just to jot them down.  This also included her falling asleep at the wheel on Hood’s Canal just south of Brinnon, where she hit the guardrail but awoke in time to get back on the road.  A policeman witnessed this (I remember her calling me) and had the EMTs check her out - they recommended her seeing a physician at the ER, but she declined, and finished driving home after some hot coffee.  After that incident, she made regular stops on her trips from Portland to rest.

3. She began to feel more tired and slept more than usual.  By 2004 she was writing that she was oversleeping nearly every day, and she tended to doze off in her chair in front of the television around 9ish.   Reading through her journals, I was weary from all the activities she performed on most days - albeit good that she was busy, but she did an awful lot!  Again, we attributed this to her aging rather than anything else.
4. She was nauseated a LOT!  and couldn’t shake that feeling.  However, Mom had some medical issues with staff infections in her leg (from a 1978 hiking accident at Silver Creek Falls, where she - in her own words - raced ahead of the party, and then slipped and gashed her leg open).  This led to hospitalizations, lots of antibiotics, and she kept believing her leg was the reason for all nausea.   Yet, it seemed as though every time I visited or saw her she was nauseated, to some extent.  Was this related to LBD?

5. She began to write about being confused more frequently - of course, there were contexts ranging from classes, people not speaking clearly, etc., but perhaps these were excuses - normal ones, mind you, but still.  There was the incident in 2008 where she demanded that her Hertz Rental Card was the Entertainment Book Card, and couldn’t see the difference...She was tired, though, I thought, so it slid to the back of my mind.

6. She began to walk less and less - it hurt her feet and, once again, she tired more easily.  She was able to push herself on some hikes, but then in 2003 she began to find herself taking more rests on regular hikes - the more arduous ones I understood.

7. By 2008, Mom was shuffling and not able to walk quite as well or as much.  She hid it, and she went with it, but it was taking a toll on her.  This was the Parkinson’s symptoms.  I recall walking from the ferry in Victoria to Craigdarroch Castle, as Mom didn’t want to wait for the bus (impatient lady).  She was exhausted after only a few blocks.  After we arrived, she stayed downstairs and rested - then, when we left she was at loose ends (although the walk was downhill) by the time we had lunch atop the Sticky Wicket.  By this time, too, she didn’t want to walk very far.  For a regular hiker and pickleball player, this was rather odd.

Now, taking each of these individually, there might not be much to consider - but having them all in a lump it gives pause to realize we had evidence but no way to understand.

Perhaps this might reach someone who could begin taking these into account, so they might be able to stave off progression for a bit until some of the latest studies have committed results.  Who knows.