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Wow!  What a task this would be.  But it would seem to me to be along the
lines of alot of existing progressive care facilities.  I know there is a
name for these places and I can't think of it.  I'm referring to the care
facilities, that are usually run by a religious affiliated organization - in
Illinois we have Presbyterian Home, Plymouth Place etc.  They include a
variety of facilities - small townhouse, efficiency apartments, nursing care
facilities.  The idea is that for a large up front endowment, you move in
and as your health progresses, you move to a different part of the facility
and your care is guaranteed.  My aunt lived in a facility in /Whitewater
Wis. and loved it.
 
However, we looked into this for my parents and found that NONE of them
would accept neurological patients - Alzheimer's and PD.  Let's face it,
they want to make money and PDers are high risk.  They won't take people who
are already sick.
 
Then we looked into nursing homes for a backup emergency plan.  (If
something happens to my Mom, the primary caregiver - I will be desperate.  I
have 2 kids, 2 and 4 and a full-time job - so moving in with me and my nanny
could be a temporary solution too.)  Every nursing home I contacted told me
that they had isolated Alzheimer's wards and that PD patient are put in
there.  I can't think a worse fate for my father.
 
Our solution has been to step up home health as needed.  My mom has balked
at additional assistance.  She is suffering from good old Catholic guilt and
a belief that this is her cross to bear and that no one else can care for
dad as well as she can etc. etc.   If I hear one more time that "this is the
worse of for better and for worse" or " god won't give me more that I can
bear."   My counter is that God also gave her the brains and the where
withal to come up with better solutions too.
 
Some of the live in help that we have inquired into was a little too
aggressive and scared her off.  The first people that came to talk to us
said that they demand that the spouse give up all control and care and
totally trust in their care.  They required that Mom move out of their
bedroom, while the nurse move in.  Just try to separate my parents after 53
years of marriage.
 
I need care that is somewhere in the middle `and it is hard to find.
 
All this to say - Pee Dee Village sounds great.  Would you take a PDer and
their caregiver?
 
>1)If you could have a helper come to your house on a regular schedule
>what would you like them to do?
 
tube feedings and meds
companionship
"eldersitting" so mom can get out without worrying
help with transporting to doctor appointments
laundry
we already have, but would still need:  cleaning services
physical therapy
nurses aids to help with bathing and dressing
regular walks, fresh air exercises (too hard for mom is he falls or freezes)
overnight care so Mom can sleep - maybe 3 nights a week
 
>2)How often and for how many hours a day or  a week would you want a
>helper?
 
I would like to see 4 hours a day, 4 times a week and overnight care 3
nights a week.  I just added that up and it is 52 hours a week - I'm asking
for the Moon! But why not?
 
I wonder how other care facilities got started.  I think we need a
millionaire to die and leave us a large grant to fund this endeavor.  Any
one know a millionaire?
 
Sara Byron