Reading your posts of frustrations I am again reminded that LewyBody sucks!

[Guest guest]

I remember the agonizing emotional hits Lewy flung at me as caregiver.

It is as awful as it feels, guys! You think because you are overly

tired and involved it couldn't be as bad as it is, but it really is

what you think! You are not a whining crybaby, you are just trying

to make sense of the senseless.

I feel somewhat guilty not having to put up with the off-the-wall

dicussions Millie used to initiate.

Just keep writing, because when it ends and you reread your posts,

you will be reminded of what a hero you really were.

there are no stupid questions, no stupid thoughts, and Lewy Body is

the most treacherous marble stealer in the universe.

Just when you think it is safe to feel normal, a UTI appears out of

nowhere.

You are mentally stable, trust me, you are probably dealing with the

most understudied disease on the planet, and if this seems to be

going too well, you probably aren't doing something right.

Caregivers are " chosen " . None of us woke up and said this is how I

want to spend the rest of my loved one's life. You just happen to be

the right person for the job.

In the case of a spouse, you probably did commit to the job years

previously, but as in-laws, grandchildren, or just good friends, you

have embarked on the journey of your life. i dare you to take your

hands of the safety bar and hold them up in the air while the coaster

zooms into a dark tunnel.

If you are new, just keep coming back.

these people are your lifeline.

If your doctor is an idiot, these folks here are your sounding board.

if you need a stronger backbone, these people will help you develop

one.

No behavior is too " out there " . Lewy Body will test every boundary

you thought you had.

you know it is normal when you can laugh at poop stories and

understand why stocking feet look like twins.

You are just fine, do not adjust your set. the channel you are

watching is subject to frequent changes, and emotional traps.

Not all advice will make sense in your situation, but someone will

say exactly what you need to hear at the moment you need to hear it.

typos,spelling, and grammar errors mean nothing on this site.

Your old English teacher isn't reading this, and the current English

teachers who are caregivers don't give a crap about form, they are

just as desperate for support as you are. If i constantly am self-

editing, I lose the spirit of what I am trying to say.

There, does that sound like the Carol in florida that kisses manatees

on the lips, in the wild?

Listen to these guys and share your med list. Ativan and Haldol are

hell on our LO's.

If you aren't prepared to be proactive in this game, you may need to

have your loved one choose a different disease.

Enough for now, see what happens when these people give a little

encouragement.

Love,

carol