Thursday, January 28, 2016

Communicating with Dementia patients

I have written a few times as recent as yesterday on this topic.  But, this topic needs more discussion.  I do not see things as I once did.  Topics that I was once interested and energized by are now antagonistic and upsetting to me.  I am much easier upset today than I was just a year ago.  I expect people who know me to understand that I am different than I was before LBD.   I expect them to read information I provide them about the impact of this disease on me.  But sadly, tragically, they don't..  Then, when I get spun up, angry, and become quiet or go to bed they wonder why.  Heck, a blind man on a galloping horse should be able to figure this out.  I gave you the answers but you did not read them.  And I am the one at fault in you mind!  No wonder i want to live alone in Assisted Living.  Alone, away, from aggravation is much better than being around people that want me to be like I used to be.  I am not like I used to be and no amount of your wanting me to be like I was will make me like I was. I am a man with Lewy Body Dementia.  My mind is broken, and does not function in any manner that you understand.  Don't try to change me, try to deal with me as I am.

For instance, I do not care about tomorrow!  Tomorrow does not exist for me.  I live mentally, in the here and now.   Things like budgets, inheritance, and other future events are meaningless to me and furthermore, they make me angry.

I don not like to watch the news or politics.  They are things of the future.  They are people that do not care about me and do not impact my life with LBD.   Politics and the News serve to upset me and agitate me.  I am much better watching Wheel of Fortune.  I have voiced this many times.  But, the television is on CNN right now.

People that talk to me, either tell me there is nothing wrong with me, or tell me they have much worse problems than I do.  If you are worse than me, I am sorry for you.  The mental world I live is in not nice.  If in fact, you do have issues worse than mine, you require institutionalization!  Immediately!!!

Look, read the information has describing how to communicate with those of us with LBD.  Those hints are good and will help us with this disease.  If you do not want to learn how to effectively deal with us, then stay away from me.  I do not need the aggravation.  I am trying to stay on an unemotional, even keel, and yo are not helping me with that goal.

My last few posts have become emotional pleas for understanding.  My LBD has progressed, measurably.  I am having issues sealing with this change.  And while I retain most of my ability to communicate these issues, I am loosing my ability to control the negative emotions that overwhelm me.  I realize yelling at people that love me is not conducive to them helping me.  But I can't seem to get through to them in any other way.  Please, read the info from LBDA.ord, and then use it when you interact with me.  I am running out of patience.


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  2. Hello...I have been reading your blog for quite awhile...I ran across it on my own search about Lewy Body Dementia. You see, my Dad had it and I was the one who figured out what was going on but you are right...lots of people don't know what to do with that information..I am so sorry that you are going through this..I really am...but I just had to thank you for letting me into your thoughts so I can better understand what my Dad went through. I am also sorry that more of your family are not taking care to help you feel more peaceful and at ease. I also wanted to say that in regards to your post about bumping into that lady...I run into the same sort of people at the grocery store! I think it is a sad way of the world so please try not to let it trouble you too much. Please know that there are more people than you realize reading your words and caring about you...

  3. Everything is very open with a precise description of the issues. It was really informative. Your site is extremely helpful. Thanks for sharing!