Lewy Body`s
And
Sundowning

As you know, I have said many times that the worst thing about having Lewy Body’s Type dementia, is the KNOWING you have it; it’s like having two diseases.

Having more lucid times that not, at the moment is a big plus side but it brings with itself a raft of problems, Guilt being one of the biggest and knowing the “NONE” lucid times can happen anytime. As my day goes on towards evening time I start to fret. I worry about what is to come and what I will say and do. Does this make it worse?? I honestly don’t know? Can I stop worrying about it? Let me put it this way. If you knew, that at some point in the day, every day, that your personality was going to change, that you would keep asking to go home (Wherever home is) and every morning you wake up you can only recall certain memories of the night before (Without the aid of Alcohol) would you be worried??

Of course you would.

Sometimes, the only way of describing it, is, it’s like slipping in and out of Conciseness, its like drifting from one reality to another. As you know I often retire to bed early to listen to my headphones (Music) and during these times my mind drifts to other times of my life or what’s going on around me at the time, then, without knowing I suddenly become immersed in this and it becomes real!! I am suddenly in this dream like state, but yet not asleep, I am living, breathing, talking, crying and screaming in this reality as the “hallucination” takes over and drags me to places I would never want to be, or see.

The worst thing is the not knowing!! Being transported somewhere you don’t know, have never seen before, been before, is not only petrifying but the feeling of loneliness is immeasurable!! It’s like being part of a horror film, suddenly I am in bed, then the next minute I am somewhere I have never been before, totally alone, with the most horrendous things going on around me, and sometimes, to me. No, I don’t always remember these “Episodes” as we have come to call them thankfully, I truly believe if I did my mind wouldn’t take it, I have a hard enough time as it is.

The reality of “Sundowning” for those with Lewy Body’s Type Dementia is this”
“At certain points of the day (Never the same time) we begin to lose contact with what’s going on around us and step into a world that only we can see, only we can hear, only we can FEAR!!”

Is there any sense to this? NO!!
Is there any Rhyme or reason for it? NO!!!
Does anybody know why this happens?? NO!!
Is there a cure for this? NO!!!
Do we remember it? Only sometimes!!

But it happens (STUFF HAPPENS!!) it is what it is!!
Imagine, just for a fleeting second, if this was you?
Imagine that this is what would happen to you on a daily basis?
Imagine, as you awoke every day, lucid and completely compos mentis that this is what you had to look forward to, and yet you have to carry on every day as if nothing’s wrong?? Talking, eating, waving and telling the world all is well. It’s such a cruel disease and sometimes, as I go to bed at night I must admit to wishing for something’s I never thought I would.
“Where does the “GUILT” come into it?
Because of my medication, and how it works for me (MY GOD I WISH IT WORKED FOR ALL!!) I have seen friends, dear friends who were diagnosed the same time as me, being overtaken by this disgusting disease, and every time someone says “You look so well” the Guilt Monster appears and makes me feel so awful that sometimes, I wish I didn’t do so well, and all the time, friends of mine are succumbing to this awful disease, this is something else that nobody ever tells you about!!

So there it is, in Black and white, Lewy Body’s Type dementia and Sundowning. Please remember, some of us with this awful disease have a very bad habit of hiding thoughts like this, I chose not to!!!!!

Norrms Mc Namara Diagnosed with Dementia six years ago and STILL FIGHTING IT!!!