Lewy Body Dementia Fluctuations - Why???

Lewy Body Dementia is still an enigma to the majority of those who are experiencing it, either through a loved one or personally.  It makes very little sense insofar as it begins rather meekly and then is finally present enough for a diagnosis.  Once diagnosed there is very little hope, in that between 60-80% of neurons have been decimated by the disease (this from a discussion on the LBDA forums pages, so where this information came from, I’ve no idea, but thought it interesting enough to share  Symptoms | Lewy Body Dementia Association).    

As we’ve seen with Mom, there are good days and bad days.  There are times when she seems rather cogent and others in which she is like a newborn babe, sleeping at every turn.  In some ways, I like to think of this as the Benjamin Button effect after the movie about the man who began life as an old man and then aged in reverse.   The underlying question, though, is what causes these fluctuations on a day-to-day basis?   We’ve no idea how we’ll find Mom, whether she’ll be sleeping or in a state of alertness; if she’ll be able to walk and eat, or if she’ll be far too weak to accomplish much that we take for granted.  

According to the LBDA webpage, (Symptoms | Lewy Body Dementia Association), the symptoms may fluctuate hour-by-hour, as well.  And nobody's quite sure what the reason is.  There is speculation that while there is neuron death the brain works hard to re-route the circuitry to make itself work as normally as it can - this would explain the bouts of sleepiness and then the surges of energy we’ve experienced in the past few months.  

This seems to be the great question with LBD that none can answer at this time.  Interestingly, though, they are finding the fluctuations also occur within other forms of dementia, as well, including Alzheimer’s, but whether or not it’s to the same extent as with LBD is unclear.  But, at this point in time, so little is actually known about LBD that researchers are still attempting to decypher the disease and its components that, perhaps, more will be understood in 10-20 years, as it happened with AD.  Who knows?  

So, as we ride this coaster we will try to keep our eyes and ears open for any clues that might help.  Sometimes answers can be right under our noses, but we are looking too intensely to spot them.

Further Information:

Lewy Body Dementias (UCSF Memory)

DLB  (Alzheimer’s Society of North Carolina)

Lewy Body Dementia: Information for Patients, Families, and …  (National Institutes on Aging and Health)

Dementia with Lewy Bodies  (Caregiver.org)

Lewy Body Dementia  (HelpGuide.org)

Diffuse Lewy Body Disease  (Parkinson’s Society Canada)

Lewy Body Dementia  (Lewy Body Society)

Dementia with Lewy Bodies (DLB)  (Johns Hopkins Medicine)

Facing West

(NB - The photos herein are snaps of older photos, so please forgive the quality. I did my best)

Looking back over the past fifteen or so years and mulling over the glacial snowballing of effects this disease has had on Mom has proven a little therapeutic, but mostly, and curiously, numbing.  How could we have known at the time her dottiness  was a symptom of what was to come?  But then, again, whatever it was it was; those bridges, no matter how rickety and tenuous, have been crossed so many times we have become more adept.  

Through the time Mom has been (as she stated much earlier in her dementia) “incarcerated” we have seen many ups and downs.  We have witnessed tremors manifesting themselves from nowhere, demands that became quite interesting (always needing those 9 oz of wine in a glass - still haven’t a clue where she learned that!), and her own observations (the trees - how they were dead and no one seemed to take them out; of course, it being winter and she denying this it was a bit tricky to respond).  

Pic of Mom and her mother ca. 1980.

Of course, her memory went very quickly.  She had forgotten the many adventures she’d had - England, Scotland, Wales, Ireland, Germany, Switzerland, France, Italy, Portugal, Spain, Greece, China and Tibet.  She actually had also forgotten her trips around the country and Canada, Mexico, Hawaii, Alaska, and the lot.  We did learn how to ask questions that probed and made assumptions about her visits - so rather than, “How did you enjoy China, Mom?” We would ask, “The Three Gorges Dam project must have been an amazing site to see built!”  This she could respond to with some stored memory.  

Mom and me in York, UK 2003

Within the past two to three weeks, this has really snowballed into a woman who is not present in our world, but in one of her own reality.  Her responses do not match (most of the time) the conversation being held.  It’s so difficult to imagine what is going on in that mind.  

At one time she was going to go to Hunter College when she was about 16 and graduated from St. Mary’s Academy in Portland.  Instead, she went to Marylhurst, Oregon State, and Portland State.  She found herself engaged and eloping to Reno.  Later, after all four of us were born and sufficiently trained to do housework before school, she went to work as a substitute in Portland Public Schools.  She would later become a librarian and media specialist, and then a career and vocational ed counselor.  Finally, she worked with special needs adults and helped them find work and gave them hope.  

Mom was always on the go.  Her friends thought her a dynamo.  Although not always the diplomat, she usually got what she wanted.   She would always find a way to accomplish something, and then stride, with her head held high.  

Mom rafting the Rogue River 2004

She was active, as well.  Swimming, hiking, tennis, pickleball, bridge, book groups, bike riding, were only some of the activities she enjoyed.  No one could accuse her of being passive, either.  She just bulldozed through life!  She was a competitor.  She loved to argue and was of a mind that she would win!  

She found comfort in reading and dinners with friends - that is when they went out.  When she was behind the celebration and had to plan, and set things up at home, we learned early to watch out, do things quickly, and stay out of the way.  Simone LeGree had nothing on her at these times.  And then, when the event occurred, she’d be back to herself, again.  

Mom walking the beach 2003

We had picnics, went camping, and learned about nature and the regions where we spent time.  We never lived high on the hog, rather she kept a penny close, and didn’t spend money on what wasn’t necessary - in her mind.

And so, as we sat today with the hospice nurse discussing the future, I looked over at my very tired and confused mater wondering what was going on in her mind.  Her responses weren’t cogent and she was easily distracted.   

From such a vibrant woman to this other person next to me is a catharsis I’d have never imagined.  

Someone told me, recently, that perhaps this process was a better way to grieve.  I’m not so sure.  

But facing west from my deck this evening, looking down into the valley and toward the coastal range I can see the sun setting.  So it is with our mother.