But the funny moments fade because they showcase
how impaired the patients are becoming, and then
it’s back to reality. When I got the job, my
boyfriend at the time asked me if I would be able to
handle it. It was a valid question and I wasn't
sure, but my goal was to learn to handle it and, I
hoped, to learn to support patients and families
facing Alzheimer’s. I knew the job would make me
cry, I knew sometimes I would feel heartbroken, and
I knew I would often be emotionally overwhelmed.
And that's been true because just as there are
funny moments, there are also powerful moments that
grant you more insight than you ever wanted into
what it’s like to live with Alzheimer’s. Like when
Ralph told me Helen woke up disoriented one day,
asking when it was time to go to school; and then
sat on his lap and cried on his shoulder because she
was disoriented and scared. Or a husband who simply
stated that within two years, at the age of 54, his
wife’s mind will be “shot.”
I never expected to be so emotionally engaged
with my patients. When I started the job, I used to
say hello and chat congenially; I now hug almost all
them. It might seem unprofessional, but I'm
not their doctor. My job is to make coming to
their study as enjoyable as possible. That’s not my
job description, but it's how I do the maximum
amount of good. Now I'm invested in my patients’
fights, while knowing they will most likely all
lose.
My scariest moment came when I identified fully
with one of my patients. I empathize with all
of them. They tell me, after cognitive testing, they
they're astounded and terrified at how easy the
questions were and how they didn't know the answers.
They read books about the progression of Alzheimer's
and learn what will happen. But Martha was
different; Martha was who I wanted to grow up to be.
I would love to be her. She was tan, athletic,
casually elegant, and ate healthy foods, but always
caved when chocolate was involved. She had the
family life I hope to have at her age; she had two
grown kids, one granddaughter, and a husband who was
in love with her. When I first met her, she was
funny, light-hearted, kind, gregarious, and happy;
but at 55, she has early onset Alzheimer’s. At
her last visit, Martha couldn’t recognize the food
on her plate. In the hall, she had trouble
following me; and in the bathroom, she couldn’t find
the soap or faucet. I’m sure 15 years ago, she
thought these would be the best years of her life.
She had set herself up for it; it was time for her
to travel and spoil her grandkids. Instead, she’s
slipping away. I looked at her and I wondered what
she would have done if she had known this was coming
and I felt overwhelmed. I could be her; this
disease can happen to anyone and that’s how I ended
up at my mom’s house crying.
My mom and I were watching To Gillian on her 37th
Birthday, which is about David, a man whose wife
died two years ago, but every night he goes out to
the beach where he can talk to her. Both David
and all of my patients and their spouses have been
robbed of the future they wanted. My patients and
their families are losing the 20 years of vacations,
new babies and quality time with each other they had
expected to have. And they’re living in a dual
reality. The person they love is still right
in front of them; and yet, their partnership is
ending and every day that person is a little more
gone. I cried on the couch and couldn’t
breathe for what everyone at work has lost and what
they will lose.
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