Jean’s Story

Now, looking back in time, a seemingly simple little expression from Norm, our son-in-law, might have been the first signpost we encountered in our long and difficult roller coaster ride with what we now know was Lewy body dementia.  When did Lewy body dementia start for Jean?  That question cannot be answered, since nobody goes to bed one night, and wakes up in the morning with Lewy body dementia. 
We were living in Western New York at that time, and we were visiting our two daughters and grandchildren in California, in 2004.   Norm said, rather simply, “You seem to be slowing down a little, Oma,” as it seemed to Norm that it was harder than usual for Jean to get out of the back seat of the Olds Cutlass.   75 year-old Oma never did like the back seat of our daughter’s two-door Oldsmobile, nor did she like any other two-door automobile.   To me, this event was not very significant at that time, our 53rd year of marriage.  But to Norm, who had not seen his mother-in-law for a while, there was a difference since the last visit. 
Early signs of the on-set of dementia just did not turn on the signal alarms that now, looking back, should have been seen as warning signs.   But why be alarmed at such little innocent things that go on every day, especially at age 75?  Don’t we all slow down a bit at age 75?
Then the falling started.  “Didn’t you see those steps right in front of you?”  Jean fell at the Jefferson Memorial during a visit to Washington, DC.  Several months later, there was another fall while trying to negotiate other unseen steps in another strange new place.  Now we can see clearly that in these strange areas of travel, what should have been seen as a time of need to be more careful to assist my 75 year-old wife.   There was another trip that same year to Switzerland.  All of Jean’s grandparents came from Switzerland.   But, on a bus trip through several mountain passes, when Jean could not keep her eyes open and slept for almost two hours during a fabulous bus ride,  I asked myself, “Why do we take these expensive trips, if Jean sleeps the whole time during the bus ride?”   This early on-set of LBD turned out be the end of our travels, although at the time this symptom of surprising daytime sleep was not recognized.
Jean was a church organist and choir director.  She could play ten notes with her hands, two more notes with her feet, and sing the words, and nod to the choir.  But then one year, after playing the organ for church services since the 8th grade, Jean said it was enough playing organ for her, and it was time to retire.  She did not want to admit to being unable to read and play the music.   In Jean’s last two or three years of Lewy body dementia she could not even put one finger on a keyboard during sessions with the music therapist, even though other aspects of the music therapy were producing some amazing results at the time.
Another signal flag that was missed was the matter of double vision.  Jean complained that she could no longer feel comfortable in driving a car, since she was never sure about “how many” cars were out in front of her.  Double vision could possibly be a symptom of Lewy body dementia, but our ophthalmologist did not recognize this possibility.  We ordered and used the prism-corrected glasses to correct the double vision.  Jean gave up driving our car.
Another flag that popped up that was not recognized, was Jean’s inability to write, or even to sign her name.  What is going on here?   We use the telephone to communicate to others, and so there was no need to write a letter.   Ah, but what can be done when it’s time to sign the IRS Form 1040?   Once again, a sign of early on-set of dementia went by unnoticed. 
The first diagnosis of dementia came shortly after we moved to California, to be near our daughters, and to escape the Western New York winters.  What had started as a routine annual removal of earwax for Jean, in the offices of a new California doctor, resulted in the response, “I noticed Jean’s shuffling in her walking.  That could be Parkinson’s.   You should see a neurologist.”  The neurologist immediately recommended an MRI, which was followed by a PET scan, resulting in a diagnosis of Lewy body dementia, with signs of Parkinson’s, along with the remark of the neurologist, “this has been going on for some time.”  

It was now more evident that there were a lot of indications of early on-set of dementia that were simply not recognized by us or by any of Jean’s previous doctors.  The previous two years had seen many visits to specialists, and three visits to the ER, none of whom recognized the early on-set of dementia.

William Schultz

Feb 29, 2016