Monday, June 06, 2022

Understanding the present can help to know the future

Dementia is the collective term given to a group of symptoms that involve the progressive deterioration of brain functions related to memory, thinking, motor functions and behavior.  While every case is different, there are several specific forms of dementia, like Alzheimer's, that exhibit similar symptoms and often a similar progression.  While scientists are making progress, there is only one way to positively identify the form and that is at autopsy. 

So why is identifying a specific form of dementia important to me?  Because as a caregiver, I am trying to understand what is coming at me in the future.  What lost functions am I going to have to respond to?  What behavior changes should I expect?  What help am I going to need to deal with these changes and to keep my own mental health?

While Pam's official diagnosis is Unspecified Major Neurocognitive Disorder, there are certain symptoms that lead me to believe that she has Lewy Body Dementia (LBD).  When you look at a list of the symptoms common to many LBD patients, Pam has almost all of them.   She's developed a shuffling gait when walking and has significant balance issues.   The fluctuations in her memory and cognitive abilities can be dramatic.   Some days she seems to be in a walking coma, while other days she is bright and alert.   And she has had REM sleep disorder for about a decade.  It was the onset of almost daily hallucinations that led me to seek an appointment with a neurologist shortly after we returned from Florida in May of 2021.   
Interestingly, many family members of someone that has been diagnosed with dementia can look back over the previous decade or so and point out early symptoms that were so subtle that they went unrecognized back then.  In Pam's case it is the REM sleep disorder and at least one instance of hallucinations.  These were early sign of dementia that I did not recognize as such.
There is significant evidence that LDB and Parkinson's Disease are related.  The same brain protein is involved with both.  Also, many of the symptoms of the two diseases are the same, just that they appear in the opposite order.  For Parkinson's patients, the movement symptoms appear first and the hallucinations and memory symptoms  appear later.  Just the reverse of Lewy Body Dementia.   The Michael J. Fox Foundation is funding significant research in this area.
So what now?  If I assume that she does have Lewy Body Dementia, what next?  There are a number of resources available that are specific to LBD.     Among those resources are descriptions of the stages of LBD and the progression.  Armed with that information, I can anticipate the progression of symptoms and their severity.  I recognize that this is not an exact science.  But it can serve as a framework for me.
Knowing all of this information does not make my world as a caregiver any easier.  I still can not talk about our upcoming 50th anniversary without a strong emotional  reaction.  In many ways I understand how fortunate I am as a caregiver because I have been spared many of the significant behavioral issues that accompany dementia.... at least so far.  But having a pretty good idea that it is LBD helps be become more prepared for the future.  And that includes the understanding that I need to be more prepared to care for myself also.  The physical and mental toll that being a caregiver will have on me (and our daughters and grandsons) will be significant.  So I need to plan for this.  For the time being we treasure every family gathering. 💝 They will create long lasting memories for each of us.   Well, as long as we don't end up in the same position as G-mom.  😟



  1. Though my wife has been diagnosed with Alzheimer's, I share most of the concerns that you have. Alzheimer's is not the same for everyone all the time so I also want to know what to expect so I can plan.

  2. Knowledge is power, even if you are powerless. I try to learn more and more about this terrible disease and the more I learn I guess it helps a little, but does not make the hurt go away. I too want to learn more about what will happen so I can prepare as much as possible. We cannot do it all alone and I am happy to hear that you have family that is helping. I don't know what I would do if I did not have my sister-in-law to assist. Stay strong and thank you for sharing.