PR:
When my father died
six years ago, there
was not anything
even close to treat
PSP. There are
several different
strains of PSP, and
he had the strain of
PSP that was the
Parkinsonian type.
That was just one of
the things that
confused us further
because when he was
diagnosed wrongly
with Parkinson’s, it
seemed that he was
initially responding
to the medication.
People who have the
Parkinsonian type
can sometimes
respond to
Parkinsonian meds,
at least initially,
and he did for a
while. One
thing I want to be
sure and mention is
there is a kind of
treatment called
VitalStim Therapy
that can help with
speaking or
swallowing. The
treatment is done by
a speech therapist.
They put these
electrodes on their
throat and have them
try to speak or
swallow at the same
time. It got my
father speaking
again for another
couple of months and
he could speak while
he was doing the
therapy; and it kept
him swallowing until
he died. This
therapy was
miraculous. I am
convinced if it had
not worked out, my
father would have
had to use a feeding
tube.
GB:
You were also a
long-distance
caregiver for both
your parents?
PR:
My parents both took
10 years to die,
give or take. My
mother had so many
different diseases
and then had a
stroke; it was one
thing after another.
It was a long, slow
steady decline and
loss before my
mother finally left.
Neither one of them
were themselves one
day and the next day
died. This was not
the way they
expected to go. It
was so shocking and
so horrible. My
sisters and I went
through a long
process where we
would take turns
visiting them. My
parents insisted on
retiring where none
of us lived because
they did not want to
be a burden for us.
It ended up being so
much more difficult
because it meant
that every time
there was a health
crisis, of which
there were many, we
would have to take
turns going there.
So it would be me
first because being
a celebrity helps
get attention at the
hospital. Then we
would go in tandem,
one after another,
so that there would
be somebody there
longer.
GB:
It is what we call
the
professionalization
of family
caregiving.
PR:
Also, I really do
not trust nursing
homes. We had the
best nursing home in
Virginia Beach and
my dad got hurt by a
nurse there. They
covered it up.
They did not file an
accident report.
They hid it. They
did not put it in
the records. They
did not even tell
his doctor.
Only because I
happened to turn up
and I had a
caregiver in the
room with him every
day did we find out.
One of the things I
learned, and that I
would tell the
caregivers, is if
you have a family
member in a nursing
home, never visit
the same time of
day. Go and
show up at 6:00 in
the morning.
Show up at 8:00 at
night. Never
let them know when
you are coming.
You have to stay on
top of them.
GB:
That is exactly
right.
PR:
And make sure you
are checking all
over their bodies to
be sure they do not
have sores. If
there is an incident
ever, if you see
that there is some
kind of infection
going on or
something that
happened, you check
their chart to be
sure it was marked
there. Make sure
that there was an
incident report.
These facilities are
supposed to be
reporting if there
is any kind of
incident. If it is
not in there, you
raise Cain. I just
had to learn these
lessons the hard
way. There were
really horrible
things that happened
and we learned the
hard way. GARY BARG:
The result is that
you raised the
visibility of your
dad from being the
patient in room 201
to being someone
that people are
really looking in on
and caring about.
PR:
Yes, but you have to
be careful. We found
out that some of the
nurses were calling
my father King Larry
because they
resented that. On
the other hand, we
heard there were
people that had
families who lived
in town and did not
have visits like my
dad got. Even
though they may have
resented him and
called him King
Larry, I do not
think they dared do
anything to him
after that. They
were worried because
they knew we were
watching.
GB:
That is right. I
think that is worth
its weight in gold.
