Lewy Body Dementia or LBD has so many things it does to really screw with the patient it can boggle the mind. At first blush, the up and down cycles we have where we are normal one moment/hour, demented the next, normal some time after than, fruity like a cake later in the day, the party never ends with us. The hard part is the constant effort it takes to keep up with reality, something that can leave us exhausted at times.
But I am not writing about that duality, thats a burden unto itself. Today I am speaking of another one, one that almost seems required by society. That is this: there seems to be a very very common feeling that if a person sees an LBD person looking good at one moment, that is the assumption about all moments not-seen. And because we can, we always put all of our effort into putting our best mental foot forward for all to see...and if our attitude about all this going-crazy-then-dying shit is good enough, we get known as good soldiers and then that level of "stiff upper lip" becomes the expected norm. If you could only see us on the inside while we are doing that.....
There are times I am so tired of the journey, the constant battle to do things others find effortless, and its not enough to not fear or dread death, you are expected to be a fount of good cheer and an inspiration to others. But the deity as my witness, some days all I have is the old man version to work with......
Edit: This is another fun aspect of LBD, never being able to complete anything more than the simplest of thoughts in a single go. What this article needed to "bring it home" was always intended to be this:
To use an exaggerated example, just because performers in Cirque Du Soleil can perform those amazing feats for hours in front of you for a show, would you not feel stupid assuming they or any human was capable of doing that every waking minute? And without mishap?
If you need something simpler, take a high school track star; not average, I mean star. They can run the minute in some fantastic time but is it realistic to think they can run like that every step of the day? Not a chance in hell.
And if not them, why are we? Thats what it feels like when at any given moment we are not only to be "up", we are expected to be the very best that we *ever* are, with *all* the effort we have left to give. Its us running that mile.
Now this may be too tricky for some but hang with me here, it will help everyone...so if you give athletes and other high-focus performers time to rest and recuperate and only make them get up and to the dog-and-pony show for limited amounts of time. how hard it is to conceive that might work for us too? We can do things, we can on rare occasion perform outside of our mental weight class even but its ours to choose when and if we have the ability to do it and if we don't, don't give us any more shit about not being up to stuff than you would that high school runner for not running every step of his or her day at top speed.
Its as simple as that kids. We do what we can every day; what we can NOT do is swing for the fence on every at-bat.
The day folks learn this is the day ....there is a term used in medical circles called "quality of life" or the state a patient is forced to live in (pain, chance of recovery, etc). What no one talks about is "Quality Rest-Of-Life". If folks understood this fundamental thing, it would improve the quality of the rest of all of our lives......