Medicaid pays caregivers only $9.00 for ENTIRE night

[Ivan M Suzman <cureit@xxxxxxxx>]

Dear list,

Hi from the rocky Atlantic  coastline!  May I please have just a few
moments of your attention?

 I have worsening PD, and lack sources of overnight caregiver (CG) pay (I
am on social security). Hopefully, other PWP's will benefit from  knowing
about my situation.

I just don't know what more to do about locating a caregiver to stay
overnight.  Medicaid here pays only $9.00 to a CG who is here throughout
the ENTIRE night - not $9.00/hour!  So  a CG who needs a place to live at
no cost is the only possibility. Maybe I should sell quickly and move
away to a small apartment. I could try to get that adapted to my needs
somewhat.  But it seems so unlikely I can ever live independently again.
I could use the house proceeds for a while to hire someone. That might
buy a little CG time...but how much? There are many  CG ads posted, but
no success after 6 months of  trying.

  The repetitive off-periods after dark, are too much for them to handle,
and so I get temporary care.  Also, it upsets them to see that I am
getting pain deep down my ear canals and neck and jaw area every time I
go into an off-period, along with stiff painful legs and killer toe
cramps..  I function  surprisingly well when I'm on, even drive around on
errands, which fools people..  I am wearing a wool cap in the house, as
cold just worsens the pain extremely.

Any thoughts would be appreciated.  But forget about nursing homes.  I am
too young, and my "assisted living center" is also my "adapted for
Parkinson's" center --  my own house -- for now anyway.

Maybe I'm too stubborn for my own good. I don't know.

Thank you

Ivan Suzman 49/39/36