Wednesday, October 12, 2016

How I feel

Sorry for the title, but it best fits this post.

I have written before how nights are very difficult for me and for my wife because of how I am degenerating.   Much of the time, my thoughts are of running away.  Being alone, in some out of the way place, independent, with little or NO human contact!  I enjoy being alone, without the TV, radio, or music on.  I enjoy quiet!

Since I have always been a very gregarious person, who was energized by other people, this is totally out of the norm.  For those of you who are Psychologists or self-educated psychologists, I also have some self-destructive thoughts.  None I want to act on, but my emotions have been running high.

Since the recent downturn of my LBD, I have all but lost my self-esteem and self-worth.  The manner in which people treat me contributes greatly to this emotional issue.  I have commented before on the attitude that people use with me, denying that I have LBD, even though they do not know what LBD is.  I have been called a liar and even told I use a cane to get attention or sympathy.

Recently, people in the CCRC I live in have begun to tell me to be quiet!  They say I talk too much!   I will admit I enjoy talking with people and being friendly.  It seems they do not want to be friendly with me.  I will admit, I try very hard to be outgoing as I walk around the community.  But, for some reason, I have been branded persona non grata!   It appears the ones in political positions, that also do not like other handicapped individuals, now do not like me.  So be it.

But you can see how all of this adds up to a negative emotional burden.   And that is the issue.  I have read that Dementia patients, of all types, (i.e. Alzheimer's, Frontal Lobe, LBD, etc) are more comfortable when living with others effected by Dementia.  That makes perfect sense to me!  Much like the Leper of old, those of us with Dementia are considered outcasts!  It is this emotional chastisement that exacerbates our depression and social issues.

You may not believe it, but I am lonely, in a community of 500 people.  I no longer enjoy Billiards nights because of the cold shoulder I get from a couple of the men.  It is like I am contagious.  Or, maybe, they just think I am a liar or a malingerer.

If I were alone, these issues would not be there.  LBD is a difficult journey.   I wish it was over.

1 comment:

  1. I have been reflecting on your comments about others not believing you have LBD and the anguish that causes you. I sympathize! I know you are a Christian man and you will remember Doubting Thomas, who would only believe Jesus after he put his hand in the hole made in Jesus' body by the spear. Maybe this is part of God's plan for you - that you will be an example to the Doubting Thomases of the world - convincing those who do not believe that LBD is real and that affects each person in a different way. I hope you do not mind me putting that thought out there. Sending prayers your way