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| Jamie enjoying a smoothie for breakfast in our new home, 10/12/16 |
Every day I put off writing these things because by evening
I’m spent without one cent of effort to spare. It’s 9:30. I’m in bed, having taken my last 300 mg
gabapentin for myalgia, two ibuprophens for a toothache and a probiotic with the
last dose of antibiotics. My head throbs achingly around the back of my neck, my
ears are ringing louder than my fingers on these keys and all my neurons spark
the same advice: Let go and watch something you can drift to sleep to. Think of
your health. But my heart tells me, as it has always believed, that I have to
let go of the comfort of my little dog and soft bed, and the expertly composed
Siren song of entertainment… and write a few things down.
Jamie is 63, tall, slender, graceful and soft spoken. I want
you to know her as well as I do, so I write about her. But I don’t know her
very well. I can’t learn anything much from her. She’s losing words at a rapid
pace. Language is slipping away from her: expression and perception. They call
it Progressive Primary Aphasia. I arrived at that diagnosis myself when I read
an article a few months ago. Her caregiver Mary showed me the same article in a
different magazine at the neurologist’s earlier this week when we took Jamie
for an EEG. Not all those with PPA have Alzheimer’s, but Jamie has advanced
Alzheimer’s with pretty bad dementia.
Seven months ago I came to live with her, because my Dad asked
me to take care of her when he died, and he did. I’ve known her casually for
about three years. In 2014 I took a trip to Nicaragua with her, my Dad and my
cousin Jane from London. In Nicaragua Jamie had some difficulty navigating
uneven terrain, and she couldn’t read at all, but she could find the restroom
in a restaurant by herself if you pointed her in the right direction. She could
laugh at jokes and tell you whether she liked the fish, choose something when
browsing souvenirs, stroll for an hour in the evening air down the main street
in San Juan del Sur. Pick a fight with my dad.
Just two years after Nicaragua, Jamie can barely speak.
Barely understand. When she sits in front of the TV, even her favorite shows,
she just stares at the floor in front of her. If you give her any kind of
direction, like “Please sit here,” she doesn’t do it. She’ll just start to
slowly walk away to who knows where. You have to walk her to the chair. If you
say “Look at me,” or “Look at this,” while pointing at something right in front
of her, she doesn’t look at it. She’ll turn her head in another direction
instead, as if doing what you’ve asked, but it’s never what you’ve asked. She
can barely use a fork. She usually eats with a spoon, or with her hands. She
can’t move apples from a bag into a bowl, or take a dirty fork and place it
into the dishwasher basket. Just six weeks ago she could do both of those
things with a little help and practice. Not any more.
Jamie had a particularly lucid day today. Self-aware, she had
commented at dinner, “I can’t walk.” I asked her “Can’t walk or can’t talk?”
“Talk,” she corrected herself. She was more present and aware today than she
has been in a while. We just started a new drug – and maybe it was doing
something. I empathized with her lack of words and promised I’d speak slowly,
and use fewer words. She liked that idea. I gave her the advice to try not to
stress about friends coming over and talking too fast, but to work on sensing
what the person is trying to do by talking, ignoring the complicated words
they’re saying. Maybe they’re just being friendly. Maybe they’re simply saying
“I love you,” by telling you about their day. When seeing the intention, the
words matter much less.
She appreciated my advice, nodding a little condescendingly
– like, “I could have thought of that myself.” When she’s self-aware she’s the
teacher, the authority. She was an economics professor for many years, and
still naturally migrates to thinking she should be in control. That look should
have clued me in that trouble was brewing.
She usually lets me put Andy Griffith on. and stays put
while I take out the dog. She didn’t want me to leave her for 10 minutes
tonight, however, so, surprisingly, she agreed to join me for a short stroll
down the street.
I asked if she wanted to wear her slippers outside. “No.” I
offered her clogs, she took them, walked into her bedroom and put them by her
bed, then turned toward the door. I didn’t correct her. She agreed with the light jacket I put
on her, nodding so it was her choice. We slowly navigated the porch stairs
together, eager pup leading the way.
After one pleasant block she became a little unsteady so I
asked, "Do you want to go home?" She replied, “Yes. Better.” So we headed back to
the house with Jasper, my Westie. I noticed that I had to sort of pull her as
we got to the house. She reluctantly got to the top of the stairs and muttered
something that I interpreted as, “Do you know these people?” I laughed it off,
“This is our house.” She absolutely did not believe me and by the time we were
inside she was having a full-blown melt down, which she hasn’t had in a long
time. Maybe self-aware was not a good thing.
Now she’s the boss and she’s scolding me – eyes wide –
demanding I take her home. She stammers, “You’re crazy!” Infers that I’ve
kidnapped her, “You took me!” and asks about the other people in the
house. “Who’s here?!” For someone
with very few words, she really can communicate pretty well when she has to.
With broken sentences, gestures and expressions she lets me know that she is
not going to stand for this.
I suggested getting in her nightgown, hoping she’ll agree
that maybe she’s just tired. I let her do as much as she could herself because
she was in a very independent mood. She struggled but managed to undress. I
show the utmost patience helping her with her nightgown because I don’t want
frustration to devolve the situation even further. I normally hold the
nightgown so that the two holes for her hands are easily accessible and I guide
each hole over its hand so that she barely notices I’m helping, then she raises
her hands and slips it over her head. It’s a joint effort, as most things are,
to keep her feeling good about herself. Tonight she fought my help, insisting
her second hand belonged in the neck hole. I gently pull the neck off her arm
and slide the other sleeve hole over it.
She was dressed for bed, but then, without a word, she proceeded
to remove her Depends. This was her final gesture of defiance. She still meant
all those things she had said – that I was the enemy in this shocking story of
kidnapping and deceit. She hates those Depends (until they’re her best friend.
It’s a hate/ humbly accept relationship). Tonight she didn’t complain, cry or
argue – she simply took them off and left them on the floor.
I’ve raised six kids, so I know a tantrum when I see one,
even without the yelling or stomping. So I gracefully slipped out of the
bedroom and left her there, panty-less, her toothbrush by the sink loaded with
toothpaste, waiting. I had moved on to the parenting phase, “So you want to
play it like this? Let’s see how long you last without me,” and without a word,
or any malice, I simply went to the kitchen to do the dishes. I paused every
few minutes to listen for her. Finally the call came. “Come here.”
“What?” I called out, walking only a few steps toward her
room.
“Come!” she said, a plea in her voice that I was happy to give
in to.
Very quietly she said, “You’re right,” motioning me to come
sit next to her on her bed. She put her arm around me and hugged me. “You’re
right,” she said a few more times. What a relief!
“Did you brush your teeth?” She was proud that she had done
it alone. She let me walk her to the toilet. She even dropped the toilet tissue
in the toilet rather than on the floor. She let me put fresh Depends on her
without a complaint, or even a sigh, one obedient foot at a time—toes pointing
contritely as they slipped into their proper hole. She was trying to be good
for me, and when I tucked her in bed she quietly told me she loved me.
Now normally there’s a big chorus of “I love you!” that goes
on and on for about 10 minutes, both of us silly with how much we love each
other. Tonight it was a humble gesture of gratitude that acknowledged a hurtful
round of accusations. “You took me!” she had said – kidnapping was the only
logical explanation for how she got here. Now, as I turned up the ocean waves to
lull her to sleep, and I kissed her one final time, that single confession of
love was the lifeboat I needed to continue believing we can keep doing things
this way… a little while longer.
October 24, 2016
