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-=> Quoting Maurice Kinal to Nancy Backus on 09-27-05  17:37 <=-

 NB> Seems strange... I've been out of the loop for almost 2 months.  Life
 NB> got crazy here... still isn't totally resolved... Loooonnnngggg 
 NB> story!

 MK> I got time.  I was wondering where you disappeared to.
 
I had a family wedding to go to August 12, followed by a week of camping
with my extended family.  When I returned, I was only home 2 days before
the woman for whom I am POA and health care proxy got sick with a UTI
and pneumonia, and had to be admitted to the hospital.  So I spent over
a week mostly at the hospital with her, pulling down 15-hour shifts most
days, I think it was 8 in a row... all I did at home was go there to
sleep a couple of hours.  She is about my age, but has CP (cerebral
palsy) and COPD (chronic obstructive pulmonary disease), and a bunch of
other stuff that's in comparison rather minor.  The CP makes it
difficult for many to understand her (among other things), the COPD
makes her very susceptible to pneumonia.  Over the years, I've developed
a relationship with her doctors as well, so when she's in the hospital,
sleeping around the clock, or hooked up to breathing treatments, I can
discuss her medical issues intelligently, and ask the right questions. 
Oh, and keep my eyes open for all the stuff that falls through the
cracks with medical personnel not familiar with her panoply of meds,
etc, and watch for the anomalies that might indicate that something is
wrong.  And once she starts getting better, one of my functions is
keeping her there long enough to be sure* she's medically ready (as
opposed to her just wanting to be) to go home.  And the other major one
is to facilitate all the tests, people and paperwork needed to get her
to discharge.  And actually, involved as all this sounds, this was only
the small part of my crazy absence.  We went home on Aug 31, so I could
have been back to about normal...  exhausted, but pretty much normal.

Trouble this time was, in order to get her home, the home health agency
that supplies her 24/7 health aides and her weekly nurse who checks her
vitals and fills her mediset and the occasional therapist, decided, in
their "wisdom", that she needed the regular assist of 2 people, not just
the one she regularly has.  And of course, the insurance (even if it
hadn't been Medicare/Medicaid, the gov't programs) won't pay for two
people.  Granted that she is overweight, and, due to the CP, a bit
floppy.  But, it really does NOT require the assist of 2 unless she is
practically unconscious, or one of the 2 isn't exactly competent.  Even
in the hospital, without her full strength back, she was able to do
enough of the assisting to move herself around in bed and such that I
was able to assist her by myself, and I am only allowed to lift or pull
15 pounds, 25 max in a pinch and very carefully.  Plus, of course, I
couldn't brace myself properly, given that my right ankle is still
healing from the break last February.  Yet I was able to do what needed
to be done, without endangering myself or her.  And the other piece of
this, is that it was one, maybe two, of their aides that had NOT been
taking proper care of her, which is what landed her in the hospital in
the first place.  So to me it sure looks like a good case of CYA on
their part.  Also, they've been making intimations on certain levels
(not the aides themselves that actually do the hands-on care, mind you)
that she'd be much "safer" in a nursing home instead of her own
apartment.  She, on the other hand, is adamantly opposed to the very
idea of a skilled care facility, and in fact, wouldn't (and couldn't)
get the hands-on care she needs to have, one on one, if she were to be
in such a place.  Her doctors, and as you may guess, I as well, quite
agree with her on her non-suitability for such a place, at least for
now, and probably right along...  She'd have to have no brain at all
left, basically...  And what's wrong with her certainly isn't in her
intellect at all.

Anyway, they presented me with their "solution" to this... I would just
have to sign a contract with them to provide (either by my own person or
a schedule of qualified persons) a second person in the house, at all
times, in order for them to be willing to reopen the case and resume her
services with them.  I'm sure that they expected me to back down at that
point, as it was obviously an impossible venture (to say nothing of
being a rather trumped up premise).  Instead, I signed my life away, in
order to get her home, where we could start working on other solutions.

It also sounded, at the time they first were proposing this, that this
was only if she wasn't cleared by the hospital to be safe with the
assist of one.  So over the weekend, as the doctors and other personel
at the hospital talked things over with us, we went along with doing
discharge planning that expected her to clear the hurdles.  In fact,
when the hospital's Physical Therapist checked her out, she was sure
that she was safe with no more than one assist.  And a night nurse, who
used to work as a home health aide, witnessed my ability as a
"half-assist" to do the job, and wrote up a long comment to that in the
record.  And the doctors also were convinced by their tests and such
that she was good to go with no more than one.  Nevertheless, the agency
already had decided that assist of 2 was necessary, and wouldn't even
listen to the facts.  Instead, they pumped some of the Patient Service
Techs, whose guidelines tell them never to try to move a patient by
themselves, and who never let the patient assist, and got from them the
"truth" that of course she needed the assist of at least 2, maybe more.

Sorry, I guess I'm still* (now what, over 2 months later) a bit steamed
over the railroading here...  :(

But yes, I actually signed it, and they still refuse to release me from
it, even though in actual practice it is PATENTLY evident that it is
nothing but bull.  It's been useful in some instances to oversee what
the aides have been doing (and/or having my presence encourage them to
do their jobs properly), and it was useful when I broke in a new aide
for overnights.  And I won't deny that I can be useful in taking care of
her.  But necessary?  Not at all.  

How is it working out?  The one aide most likely responsible for the
hospital visit didn't come back, the aide I wondered about I had to stay
with for her whole shifts, but the others, including the new one that I
helped to train OTJ, all covered for me, sent me home to sleep or
whatever, have some semblance of a life, etc.  And even those who think
I need to be there still expect me to get her meds from the pharmacy,
and don't quibble if I should happen to go home for a short bit to
change clothes or shower, or am out to do her grocery shopping.  I still
have to be there for when anyone from nursing or therapy is scheduled to
be there or is expected to call me there, as it is their part of the
agency that actually manipulated this situation into happening.  And I
usually would have tried to be there for most of that, even before the
stupid contract.  I also always try to be there for when her doctors
come for home visits, and anything else where decisions need to be made. 
I am, after all, her health care proxy and her POA (for everything).  It
appears that the aide side of the agency (supervision included) thinks
that it is just really ridiculous for me to be stuck there.  Fortunately
as it turns out, since this past week I came down with a bad case of
(probably) strep throat, and haven't dared bring my sickness over to her
house, even if I had been up to it (which I wasn't at all for the first

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