Cari,
I can sympathize with you regarding the headers on the list mail.   I, too,
struglgle with keeping up with
it all. When I  try to respond it takes me forever but for a different reason.
Since pd, my typing which was never good to start with, has gone straight to
hell.  The only reason I looked at your note tonight
was because of  your header,  I was iin the middle of following a thread from my
mom.  Its her first solo atempt using e-mail and was receiving a plethora of test
messages.  She is going through this which is helll for her so that  she and I
can communicate better.  My speech isn't much better than my typing,
And I'm very proud of all her test messages.

Why rattle on?  Because I think it is important for you caregivers, especially
loved ones, to be told once  in a while, how  wonderful you are.   How
appreciated  you are even if the Parkinson's forces us to make  comments to the
contrary.  You are incredable!

If you also subscribe to SPARKLE skip the rest of this.
In case you don't here is my poem  written  to my husband who is my caregiver.
HOPE  today is a better one for you.

Cathy



Hi Mom,
a good thing
I'm creating once again.

love ya,
Cathy


My Love's Tears

Let me  shed  tears for you, my love.
You, who stand by and watch,
Ready to spring foward to catch a fall
Or offer a hand up when  you find me
Stuck in a  deep comfy chair.
Or  splayed precariously on the ground.

I am the at the center of this terrible disease
Focused on  me is all the attention and sympathy.
Yet you, my love,  relegated to the margins,
Feeling  the hurt and the injustice as much as I
Are forced to watch the dissembling of my body
And with my body, your life.

How horrible it must be for you to watch
The one you've loved for so many years
Destroyed step by unsteady step in front of your very eyes.
Destruction
As unstoppable as a funnel cloud in the Midwestern sky;
Working as  drops of rain that created the canyons.

How awful it must be for you to watch, my love,
Able to do nothing to prevent the inevitable decay.
Feeling helpless? Impotent?  Incredibly mortal?
You,  with your very soul anchored in immaculate control.

At least, that's what  you show the world.
Disguised as arrogance. Self-importance. Self-assuredness
I have seen the helplessness show through
As you attempt to be everything to everyone.

To fill all the holes --
Husband, father, provider,
Mother, cook, housekeeper,
Dog walker;  gardener,  chauffeur, crutch,
Companion, friend, caregiver,
All the while, keeping your own life in semblance of order.
Asking for help from no one.

A task which calls for a mythic  hero or god
With spells and potients  and magic at his fingertips.
A task for no less than a Merlin or an Atlas.
For a flesh and blood mortal man,  .
Even with all your noble and courageous intentions.
A quest doomed to failure.

Let me shed tears for  you, my love,
For not one sigh  will you utter in your own behalf.
The curse that is taking my body
Crushed any stoicism of mine long ago.
So please,  let me shed tears for you.
They are all I have left to show  you my love.

                                    camorse
                                    November 1999


Cari Barrett wrote:

> subject header seems quite serious doesn't?
> makes you want to read it in case you're missing something or someone you
> don't know about. . .
>
> instead all you're going to find is a bunch of wasted space and people
> talking about something completely unrelated to the site or (MORE
> IMPORTANTLY) the subject header -
>
> for all of those on the list who enjoy the freedom to ask, say and share
> what's on their mind - we celebrate you -
>
> for those of you on the list who do not (and i say do not rather than cannot
> - because it is obvious that the list members are a savy, computer literate
> bunch of folk) even take the time to change the SUBJECT HEADER to
> appropriately describe what you're sharing -
>
> SHAME ON YOU!
>
> i agree that there should be no censorship, merely (oh please, no puns or
> play on words here!) respect and consideration for the guidelines set forth
> when we first entered this site -
>
> but honestly, today has been one of those days that makes many of us (i share
> this statement with others without permission) want to sign off forever!
>
> sure, if i send in an email about SEX and the lack or increase thereof with
> cute words, interesting tidbits, etc., i'll bet there will be many responses
> to tell me to "hang in there" or "get real" or "please, this isn't the
> place...", etc.
>
> what i have never understood since becoming a daily member of this site, (yes
> - i'm an internetaholic or whatever y'all were saying) is why so many members
> absolutely
> *   MUST USE WRONG SUBJECT HEADERS and
> *   MUST RESPOND TO THE LIST with what, obviously   should be directly to a
> single individual -
> it's as though you know what should be done, but want everyone to see how
> clever you are that day -
>
> i fear that this site, tho' extremely informative and pleasant to spend time
> in, IS becoming the arena for a maximum of 10 members to chitchat in  - i
> mean, please, LOOK AT WHO THE PRIMARY USERS ARE!
>
> let me state here, so that i can in good conscience actually SEND this thing
> - say that i started typing this over 6 hours ago.  why the delay?  because
> since i returned from san antonio to take care of my dad and grandmother - my
> grandmother is back in the hospital and we must now put her ALC or hire
> someone tomorrow to be home when she is released from the hospital -
>
> i started typing my reply earlier today and have been interrupted until now
> to finish it by phone calls and taking care of notifying relatives,
> caregivers, church members (don't even go there), etc. before tomorrow -
>
> i must admit that i am FURIOUS because altho' i, too, enjoy sir james'
> messages to the list - i find it heartbreaking that he is called
> groundbreaking or pioneering for this round of newbies or whatever the heck
> it was -
>
> why?  because he's entertaining?
> what about me who has been asking for help, sharing stories, giving my 2
> cents worth and rarely, rarely do i get a response unless i specifically ask
> something of someone offline (not offset (!) tho' i did enjoy that round of
> banter. . .)
>
> i read everything sent to me because it just might help me help my dad -
>
> today i must admit that i think many of "us" (i'm part of this family too...)
> were totally rude to the rest of us - you carried on as tho' business hours
> are M-F with weekends off -
>
> how wonderful to see 1 or 2 new entries from new folk who genuinely NEED help
> - nobody wants it.  none of us want to be here - we would rather be on the
> animal planet site or the anything else site, but HERE is where i learn
> things.  here is where i can share things.  and here is where we need to
> respect the simple F_________________G guidelines (they aren't even died in
> the wool RULES, for heaven sake) laid out for us -
>
> WHY CAN'T EVERYONE JUST USE THE SUBJECT HEADER CORRECTLY?
>
> thanks -
> cari
> daughter of
>
> note:  i'm absolutely NOT going to read this again b4 i send it so just know
> that...