Sunday, March 19, 2017

You don't look like you have Dementia! You don't look SICK!!

Those two statements send me into a rage!  If you have read my other posts, you already know that.  Today, we came home from Church and ate Lunch in the dinning room of Azalea Trace.  A wonderful meal, like all of them here.   We ate with a couple that we know and the woman is a leader in a Bible Study that my Wife is also a leader.  We are friends with them, have eaten with them before, and helped them with problems.  The husband asked me about my disease and how I was diagnosed.

I am very open about my journey.  I will openly, truthfully, describe everything that I have experienced to anyone interested.  And I answered his questions.

Then, after lunch, we split up, and I went to our apartment to let Marcel the Wonder Dog out, before his bladder broke.  My Wife was sidelined by the Wife of the man who questioned me about my LBD. She said;  Your Husband does not look or act sick.   He shows no signs of dementia!  

I have been told that by other folks here.  And truthfully, it is getting old and very difficult to deal with in a polite manner.

What actually, does a Mid-Term Dementia patient look like?  I drool, pee my pants, I have very thin skin that bleeds easily, scabs slowly, and refuses to heal.  I am unstable in my walking, use a cane all the time.  I seldom remember any one's name, do not drive the car anymore, at the recommendation of my Neurologist, and take enough prescription medicines to keep a small pharmacy in business until I die!!  And these are only the outside symptoms that a blind man on a galloping horse could see.

The people who pass judgment on my do not observe how bad my nights are, how confused I get.  The fact that I hallucinate realistic and sometimes frightening people, animals, and situations, often.  I have difficulty reading, do not know were I am, what day it is, or even what time of the day it is.   There are many other issues, but you get the idea.

How does a person with early cancer look?   How does a person with a colon tumor look?  I had a pre-cancerous colon tumor that caused me to have the ascending portion of my colon removed!!  I looked just fine!  

I am actually thinking of getting a name tag made that says;  I have Lewy Body Dementia!  I am NOT faking!  If you cannot deal with that, leave me alone!


  1. I understand completely! I also have LBD and it is so frustrating to be told "you don't look sick!" Or even worse, when I mention some of my symptoms someone will blithely say, "Oh, I do that too. Lots of people do."
    Yes, LBD is real, and it is an awful disease.

  2. On the money! Just happened to me again last Friday. I sometimes think people think we are making this up. Nonsense nobody should ever experience what we do everyday and every evening. I have no idea what they think we should look like but someday I am going to ask a couple of them to spend the night with me and see first hand what it is like.

  3. I would guess these people think they are being kind when they say you don't look sick. They think they are being complimentary. They just don't realize that it makes you feel like they are implying you are faking it. My mother-in-law has LBD. Sad watching her decline. In her case, the paranoia and delusion are the worst part.

  4. All, thank you for sharing this, all though I'm still going through the diagnosis stage (frustratingly) I have the same said to me, they act like I'm out of my mind...LOL