i belong to a support group called:
Parkinson's
Resource
Organization or PRO
it was started by a woman who was the daughter of a PWP and catered primarily
(solely, in fact at the beginning) to adult children of PWP - (at the time it
was called Children of Parkinsonians) - but the focus started including the
caregivers as well.
it has been around for almost 8 years and meets for two (2) hours twice/month
-
first meeting is caregivers only
second meeting is an open forum for all to attend - usually with a speaker
and geared around educating and updating everyone -
the first meeting is extremely informative and useful - i think caregivers
that have reached a point where they want to (a) reach out to others or (b)
learn from others are are like clay vessels - either waiting to be emptied or
waiting to be filled - and both experiences can be overwhelming -
it's also so incredible (as a woman) to view this from a male perspective -
something that many of us don't always think about -
the second meeting has very little personal input - rather listening and
asking questions - useful, but not as personally effective -
it's funny that this question came from joan today because I just recently
asked the founder -
WHAT ABOUT THE PWP - WHEN DO THEY GET TO HAVE THEIR CHAT SESSIONS WITH OTHER
PWPs? -
WHY CAN'T THE PWPs MEET SEPARATELY FROM THE CGs BUT ON THE SAME NIGHT?
I've been to my father's support group where (a) they meet during the day
(easier for many) and (b) they are welcomed together and then split off into
CGs and PWPs.
obviously every support group can't be "everything" to "everybody" but my
founder explained the following to me (and i'd like the list's feedback - i
am not biased in any direction!) -
our group is directed to give support to the CGs, primarily. by doing that,
we focus in on what is often missing and try to fill it if possible -
one of the missing pieces (often times) in a CG's life is a nite "out" or
"away" from the PWP - we all know that every person MUST take care of self
first to be able to effectively take care of anyone or anything else in our
lives -
if CGs get out for the evening on their own - they are exactly that - out on
their own - it may be (and usually is) only for the time it takes to go from
home to meeting and back - but it is time for reflection and quiet, etc. - or
a good book on tape in the car!
if the meeting has been split off and, at the end of the meeting the two
partners are joined again - that time of contemplation and absorption of what
was just "emptied" or "filled" is denied them - and too often it is as
important as the experience itself.
yes - it's tough to get away, but that's where extra effort has to be made
and family and friends or agencies are brought in to help us -
attending just one (1) of my father's support groups was the beginning of a
new world for me. i came back to Los Angeles and began going to groups here
- even my input as a daughter was valuable to others - so everyone has a
place - and a purpose AND i began to view my parents as "people" - not just
parents -
i must admit that has been the hardest part - because parents are impervious
to everything in the eye's of a child - not perfect, but impervious -
now i realize that they are skin and bones, hair and teeth, (all changing as
times goes by!) tears and tremendous fears, but also they are hopeful and
happy and steadfast and "there" - and that's pretty darn good!
. . . this vessel is now emptied. . .
Cari Barrett* - daughter of **Jo Ann(CG) & Dempsey Salter, 70/15+, *Los
Angeles **Tyler Texas
