"Do you know where my husband is? Because
he's a good one and I'd hate to lose him." This
is her third husband, so Holly, my
80-something-year-old patient, has room to judge.
I tell her he's reading his book downstairs and she
says, "He's such a patient husband." She asks
this question every five minutes of her two-hour-long
visit. She doesn't know what city she's in, but
she know she's in love with her husband.
A year and a half ago, I was finishing my post
baccalaureate premedical program at Georgetown.
I was twenty-four, taking physics with 19-year-olds,
and trying to find a job for the year I would spend
applying to medical school. In an effort to
convince myself that the work was worth it, I read
Final Exam by Pauline Chen, MD. Dr. Chen says
that good doctors recognize when death is inevitable
and then strive to make the transition to death more
comfortable and peaceful. Believing her, I decided
to spend my year learning how to be with patients
with hard diagnoses. I got a job as a research
coordinator for clinical trials for Alzheimer's
disease, which is how I met Holly.
It struck me that Holly was so in love with her
husband when she had lost touch with every other
part of her life. In marriage vows, you
promise to love each other forever. In over 50
percent of marriages, people are unable to keep this
promise, and that’s both frightening and depressing
to people in their twenties considering
marriage—myself included. And yet, as I watch,
my patients and their spouses face the hardest thing
I can imagine together, in the process, they restore
my faith in marriage as a sacred commitment.
To love another in sickness and in health is a
profound promise; and yet, it’s the tip of the
iceberg when Alzheimer’s is involved. On your
wedding day, you didn’t promise not to get mad when
your spouse forgets a dentist appointment, forgets
your wedding anniversary, forgets how to converse,
forgets your name. And if you're the one with
Alzheimer's you didn't promise to never give up and
to do your best to fight the disease you’ll
eventually lose your life to. With a diagnosis
of Alzheimer's, these are the vows some choose to
make, spoken or unspoken. And patients who can
do that save their marriages.
Interspersed throughout the struggle are funny
moments, and the only way to keep your sanity is to
laugh. The patients tend to be disinhibited and,
given that most of them were somewhat proper
80-year-olds, the things they say can be unexpected.
When I asked Mr. O’Farrell, my Irish patient, if he
helps out with chores, he said, "Well, sometimes I'm
an ass." Later in the visit, I asked him to
address an envelope to himself and he wrote, "Mr.
Wonderful.” I made a copy of the envelope and
taped it above my desk to keep me smiling. One
caregiver, who’s usually heartbroken at visits,
laughed while telling me that on Valentine’s Day,
two beautiful bouquets arrived because her husband
accidentally ordered flowers twice.
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.
What gives me hope is seeing my patients fight
for their love. I never expected to learn so
much about marriage; but watching my patients fight
for their marriages has been my favorite part of the
job. My parents got divorced when I was in
third grade because, simply put, it just wasn't
working. While I'm not second-guessing the
decision, it’s healing for me to see couples face
huge obstacles together and win.
Martha and her husband John are terribly in love.
Just as Martha’s visit is ending, John walks into
the room. He usually goes and works while she
stays at the hospital, stopping by to have lunch
from the cafeteria with her. As John walks
into the room, they smile at each other and their
eyes twinkle. John asks her if she’s ready to
go home, she says yes, and they get ready to go.
Martha can’t tell which shoe goes on which foot, so
John helps. They joke as John puts her shoe
on; and if a stranger walked by, he would surely
think it was an act of romance, not of necessity.
John sees everything that’s happening, but they’ve
chosen to live together in good spirits despite the
circumstances, and they convince me that it is
better to have loved and lost than never to have
loved at all. As they get ready to leave, his
hand brushes her stomach with ownership and
tenderness as he tickles her. With that one
sign of affection, I see that they’ve won the
battle. They will love each other until death
do them part and that gives me hope.
Kate Arnold is currently attending medical school
at Georgetown University; but before enrolling, she
worked with Alzheimer's patients for a year as a
research coordinator for clinical trials in
Alzheimer’s disease. She was able to get to
know her patients and their spouses very well over
the year; and at the end, she was amazed by how much
she had learned from them.
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