There was a four night special on Alzheimer’s Dementia on HBO about a week ago.  A number of those who are in the online group for casegiving spouses of those with Lewy Body Dementia had no interest in watching the series.  Why?

We don’t subscribe to HBO (too tight to pay for premium channels), so it was not an option for us.  I don’t know whether or not I would have watched it if I could.

Especially when I was in the thick of ministry in a demanding parish, I had no interest in watching soap operas or reality television shows.  One reason was that I experienced on a surprisingly routine basis drama in people’s lives that matched or exceeded what was portrayed in the television stories.

One of the characteristics of the pastoral ministry is that due to its nature as a helping role and the concomitant vow of confidentiality, people often revealed what might be called their “dirty laundry.”  Sometimes they confessed their darkest side in search of forgiveness.  Often they revealed the worst of their family secrets. There are many revelations that I will take to my grave.

It was hardest to deal with revealed secrets that I was bound to keep even when interacting with other family members who were not privy to whatever it was.  I heard things that would not have made the latest soap opera because writers would have considered them too hard for the audience to believe.  You know those things we assume could never really happen, at least not to anyone we know?  They are happening in the lives of people all around you, people you could never have imagined could be involved in such behavior.

Having that window to the reality in which I was living, I neither needed nor wanted to immerse myself in some fiction attempting to provide me with a vicarious experience of the dramatic.  Real life provided enough drama.

The reason those online Caregivers were not interested in seeing a special on Alzheimer’s Dementia (AD), is that they are living the drama themselves.  For that group it is Lewy Body Dementia (LBD), which is different from AD in some respects.  The confusion and memory problems and hallucinations come and go, sometimes in minutes for those with LBD.  There may be a decline that is followed by a return to  former alertness.  There is a greater sensitivity to a number of medications, sometimes the very medications needed to control some of the symptoms of the disease.  Parkinson’s or Parkinsonism is often a part of the LBD experience.  There are very many characteristics that AD and LBD have in common.

Those who live with AD or LBD or PDD (Parkinson’s Disease Dementia – a Lewy Body Dementia that emerges after Parkinson’s has already been diagnosed), do not necessarily want to watch their struggle on television.  If anything, they want television to provide them some escape from Dementia World.

I have a thirst for information that might have led me to watch the Alzheimer’s Project on HBO, if we had HBO.  Information helps me objectify what we are going through.  Information takes away some of the apprehension because it demystifies the Disease.  It reduces its power to intimidate.  It becomes more of a matter of fact part of our lives, less able to blind side us with surprise attack of some sort. Of course anything can happen at any time, without warning, but at least we know what some of those “anythings” are.

It is fine to cut out articles and inform Caregivers of programs about the disease their Loved One is battling.  Just don’t be offended if they don’t read it or watch it.  They may be on information overload just dealing first hand with the disease.  They may, as do I, find the information a helpful tool for bringing the disease down to size.

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