PR:
Yes, that is the
thing. Most of the
nurses really mean
well. You want to
have a good
relationship with
them and treat them
with the respect
they deserve, but it
is like a two-handed
thing. On the one
hand, you want to
treat them with
respect and have a
good relationship.
On the other hand,
do not count on
anything.
GB:
You mean you should
trust, but verify,
and it is a
partnership. You
cannot immediately
assume everyone is
going to be
terrible, but you
cannot immediately
assume that you are
going to get the
best care the system
has to offer.
PR:
Your parent cannot
tell you. They
have no way to tell
you what is really
happening.
Sometimes your loved
one will try to
communicate to you.
Sometimes you will
sense that they are
hearing something or
that they are
uncomfortable with
someone. If you get
that feeling, trust
it and try to figure
out a way to get
your loved one to
communicate to you.
Get a white
board. See if
they can scratch
something out on the
white board. I
did that with Dad
for a while. What
was hilarious was
when I finally got
that idea and got a
white board and
magic marker for him
to scroll something
out, it was really
hard to read. What
was the first thing
he wrote after
months of not being
able to communicate
to us? You
would think it would
be I love you or
blah, blah, blah.
Guess what he wrote?
GB:
Go ahead.
PR:
Vanilla milkshake,
vanilla milkshake,
vanilla milkshake.
That is what we got.
Vanilla milkshake. I
was like, okay, you
got it. I was off to
get one.
GB:
Can you tell me a
little bit more
about CurePSP?
PR:
The Web site is
CurePSP.org.
Now we are helping
people with CBD
(corticobasal
degeneration).
We are helping
people with MSA
(multiple system
atrophy) and a
couple other rare
brain diseases. We
are covering more
than just PSP. CBD
is close to PSP in
so many of the
symptoms. We are
helping people with
CBD and also doing
research as much as
we are in PSP.
We are helping the
caregivers with MSA.
Then we are helping
a couple of the
other rare diseases
that just would not
be able to have an
organization of
their own. That is
why we changed our
name to CurePSP:
Foundation for PSP,
CBD and Related
Brain Diseases.
GB:
What would be the
one piece of
information you
would really love to
leave them with as a
family caregiver?
PR:
When we were going
through this with my
dad, we did not have
the help of CurePSP.
We did not even know
about the Web site.
I really believe
that the most
important thing is
to get with a group.
Go online, find out
everything you can
about the disease
and find other
people like you who
are going through
what you are going
through. They are
going to be with
you. Your loved ones
are going to see
other people like
themselves. If
you go to meetings,
not only are you
going to be with
other caregivers
that you can share
what you are going
through with, but
your loved one is
going to see other
people going through
what they are going
through.
