We waited for this day. Or, to be
absolutely correct, I was waiting for the results we got today. Casper was,
secretly, in her heart of hearts, hoping for a completely different outcome.
She just forgot to tell me.
We are on our way home from the
neurologist’s office. It’s a long drive to the Traub Center in the desert. I
love their staff: they welcome you, they have cookies (it’s that PD thing about
sweets. Who knew?), they have a bathroom that has space for a caregiver to wait
inside and help; they have TV documentaries about nature that are easy to see and follow. They have
lots and lots of handicapped spaces. And none of it is obtrusive. It just meets
all the needs of a PD family and teaches at the same time. We waited for this
appointment for three weeks, and we had to get Casper through ECT before we
could make it. Now it’s over, and I can tell it was not what she wanted.
When we got there she was quiet,
but not tremoring too badly. I handed the staff my usual list of newest
symptoms, how severe the others were, and current meds. I added a list of what
I thought we needed. I asked them to make sure the doctor read it before he came
in, and not to mention all of it out loud. PD has a cruel way of taking away
one’s dignity in so many ways. Talking about it is too much for almost anyone,
and especially Casper. She’s spent this week taking stock of how much her life
has changed. She had an awareness of this appointment, but lost it in her memory
over and over. She’s been feeling useless and stupid. I’ve been powerless to change
that.
While we waited for our turn,
Casper gave up on trying to stay focused and curled up. She fell asleep on the
exam table. Then the shakes really started, and I was standing next to her to
keep her on the table when the staff came in to check on us. The nurse, Sandy,
looked at us as Casper slept and shook. Then she looked me in the eye and said “Things
are really moving and changing fast, aren’t they?” As much as I hated to admit
it, it was such a relief to see another person really truly seeing how far
things have come, how fast this has progressed. Casper slept through the
conversation, choking in her sleep at times.
The doctor arrived, and he watched.
I woke Casper, and the routine started. Flipping hands on her leg, touching her
nose and his finger, trying not to fall when pulled on (way not successful- he
had to catch her), memory tests. This trip I could not help thinking about how
he is a researcher, trying to stop PD, and his office is full today of folks
with advancing symptoms. Does he ever feel like they are fighting a rising
tide? He asks about the ECT. Apparently that team did not send a report about
Casper’s “noncompliance” and her awful reactions. We say she could not tolerate
it, and it had no effect.
He looks sad, and is quiet for a
moment. I was expecting him to try one medication, to address either the PD or
the dementia. He stares at Casper, then starts writing. I love that about this
doctor- he writes out everything you need, he diagrams, he writes medication
schedules out. It’s the little things that make life so much easier with a
progressive, chronic illness, stress, and dementia. When the patient (or the caregiver) can’t
remember the instructions, you have them, in the doctor’s writing. I can’t
begin to explain how much easier that makes things when you get home. Dementia
makes people paranoid, and those written statements make it so much easier. When
he looks up, he has two prescriptions in his hand. He explains the two meds,
one the much needed levodopa-carbidopa, which will address the missing dopamine
in Casper’s brain. The other is a dementia med, which he refers to instead as “a
memory aid.” I am thankful for his choice of words. Casper looks at him
intently, and says “What about the depression? Isn’t this just depression?”
Time stops. He looks sad. That
tide just hit the beach. I’m too far away to reach her, but his hand goes out
to hers. “This is to treat the illness. It might help the depression, but that’s
part of the illness. The dopamine loss causes depression. We are going to give
it our best shot. You need to come back to see me so we can work on this some
more.” Casper looks…I can’t tell. Her affect, as usual, is flat. PD stole her
expressions a while ago. But her hands and feet are bouncing. Pill rolling. I
see her force her hands between her legs to try to control them. He hands me
the piece of paper with more side effects to watch out for, ones he doesn’t
want Casper to even know about. I am grateful he is being sensitive to her, and
heard me.
The staff hug her goodbye. Who
else does that in a doctor’s office? Casper stumbles as we get to the car. Her
feet aren’t obeying thoughts and commands. She’s silent, then says “So I really
have Parkinson’s? That’s what he is saying? No more going back to work? Not
ever?” My heart sinks, and a tiny little piece dies in sadness. “Yes, that’s
what it means. I’m sorry. I wish we could change it.” We call my mom to run a
couple of errands so we can drive back slowly. Bless her for always stepping up
even though she is also now using a walker full time. Casino Morongo looms
ahead, and we stop. Usually that brings a smile. Today it brings confusion, although
we come out ahead. (Not because of me. I am not the person you want next to you
on a plane or in a casino.)
On the freeway home Casper suddenly
launches herself into the back seat. I am grateful she didn’t try to open the
door, as she did a couple of weeks ago on a crowded freeway. She glares at the
walker next to her, and curls up and falls asleep. When we get home she can
hardly walk. Her feet will not do as she wants. Her balance is off. Words won’t
come. Liquid won’t go down. It’s a full frontal Parkinson’s assault. We do
emergency meds, and she sleeps. As Casper sleeps I call my nurse team to ask
questions. The answers are not pretty, but they are honest. I gather more ideas
for managing symptoms, I try to figure out what plans we need to make (I am a
social worker after all, and now we need to revise again. The calendar just
changed).
Casper wakes a few hours later.
She’s afraid I am going to place her in a facility, or leave her. She’s seen it
too many times. She even took a patient home to die once, to prevent a
placement in a skilled nursing facility. She also took care of her cremation and
scattered her ashes. I spend the night reassuring her. I wake feeling like I fought
with an 18 wheeler, and with a list of questions to ask my support crew.
Two days later I wake her up as I
head off to work, with a reminder that Hawaii is getting closer. She looks
blank. “Hawaii? I want to go to Hawaii?” Yes, you do. And I do. And we will. Because
if this stupid disease is going to steal your memory, it’s going to do it in a
beautiful place with friendly people and shave ice you will always remember.
This is apparently the beginning of the tougher next stage, but we are going to
fight it with shave ice. Not holistic herbs, not organic foods. With flourescent colors, sugar, and giant cones of shave ice. Because we can.
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