My husband Marty has to take a combination of
eight different drugs seven times a day;
in addition to routine vitamins. Each morning, I set
them up in a pillbox so that there is no confusion
about the schedule. He manages quite well unless his
Parkinson’s, which he’s had for over 30 years,
prevents him from opening the individual sections.
It’s a drug’s perverse nature that by alleviating
one symptom (tremors), others are created (flailing
arms, buckling knees, freezing in his tracks).
Because his neurologist regularly adjusts doses,
times and occasionally experiments with a new drug,
I as a caregiver must be especially vigilant in
perceiving changes of behavior.
About five years ago, we were alone at home when
I heard Marty ranting to one of his buddies about
the Yankees; yet, when I peeked into the kitchen, he
was not on the phone. Even though he had experienced
hallucinations in the past, I alerted his doctor who
then eliminated one of the drugs. Since then, he’s
had no further “visions” until this past summer.
He began playing with imaginary dental floss,
speaking to “little people,” then shushing me as
though I were interrupting a high level conference.
Once again, his doctor tweaked his medicine, then
asked if I wanted to admit Marty to the hospital.
Marty had just finished the “impress the doc” show,
a phenomenon in which the symptoms of his condition
magically disappear, so we said no and left.
At 6 a.m., he bolted in and out of the bathroom,
then crashed into the armoire; he later said he had
seen a strange woman standing by the sink. Had I
made the wrong decision by not admitting him? Marty
was taken to New York Presbyterian where the
physician on call, a toxicologist, stopped one of
his meds; a drug that had previously controlled his
movements for years was now short-circuiting his
After 24 hours, his hallucinations stopped. A
team of doctors altered his medication and even
though no bones were broken by his fall, they
insisted he move into a subacute rehabilitation
facility for at least 10 days.
When something like this happens, a caregiver
functions on autopilot: rising with the sun,
lugging various sundries (tons of diet coke, chips
and cookies) and making sure the staff tends to
their loved one. I often felt like Shirley MacLaine
in Terms of Endearment when she was on the brink of
losing it at the nurse’s station. Why is his
medication late? Why doesn’t someone answer his call
button? It was no secret that the staff longed to
discharge me rather than my courteous and tolerant
Unlike most, who under trying circumstances grab
a bite here and there, I devoured Marty’s untouched
hospital chicken along with the sushi, burgers and
pizza we ordered in. My adrenalin was pumping so
much I had the energy back home to return calls, pay
bills, work at the computer and even straighten out
Marty’s closet at 1 a.m. I felt like Wonder Woman,
or so I thought.
One evening, I retired early. At 3 a.m., a sharp
pain electrified my right side, my foot was numb and
my chest felt as if an elephant herd was plotting
its next move on it. I dragged myself to the phone,
dialed 911 and screamed, “I’m having a heart
attack!” Was this the way it was going to end? Alone
on a gurney?
As soon as EMS arrived, my symptoms, except for
fear and anxiety, dissipated. Even so, they told me
to calm down, get dressed and collect my
necessities. Ten days earlier, Marty was in an
ambulance racing through traffic; now, I was giving
it a go. Since when did our marriage vows include
“monkey see – monkey do”?
The next day at the doctor’s, I found out I had
had a classic panic attack. I was afraid to be alone
or go outside, so this seemingly independent woman
accepted help from my mother and sister, who moved
in for a few days. How could this happen to me?
Indeed. A friend who I thought was unrivalled at
multi-tasking confessed that he, too, had suffered
from them. Just hearing similar stories and knowing
that this was not a heart attack calmed me down. My
doctor suggested I keep anti-anxiety medicine handy.
This new health concern, along with the stress of
Marty’s hospital and rehab stay, only added to my
fear of his return. How was I going to handle it?
Before this mishap, thanks to a watch that beeps
each time he needs to take a pill, he was virtually
self-sufficient; navigating the streets and public
transportation system of Manhattan was a challenge,
but doable. Would he still be able to manage by
himself? Would he hallucinate again? Would he be
more likely to fall? More importantly, would I be
able to curb my need to control his every movement?
“Don’t run to the phone, don’t carry more than
one plate at a time to the sink, don’t make sharp
turns. Don’t. Don’t. Don’t.” Turning into a drill
sergeant is not what I envisioned as we pronounced
our “I do’s” 24 years ago. I keep telling myself
that his safety will be secured, but all it does is
chip away at Marty’s self-confidence.
“If I fall, I fall. I can’t live in fear of what
may happen. Please don’t baby me.”
This plea extends to other areas of care as well.
For the most part, he assumes responsibility for his
own needs, unless he is rushed, agitated or under
pressure. Buttoning his shirt, tying his shoelaces
and buckling his belt become increasingly
frustrating. Good naturedly, he eventually waves the
white flag. Last week, he accidentally tore a
five-dollar bill in half. I considered fixing it,
but then realized that this was a man who once built
model ships; he taped the two pieces together as if
he were a master craftsman.
So it’s become a day by day process – when to
take charge, when to retreat.
Through it all, he never complains or misses a
chance to smile or joke, “Hey, women even give up
their seat for me on a bus!” No support group, no
online research about Parkinson’s, definitely no
self-help books. I used to see this as denial (why
don’t you want to help yourself?), but now I view
him as a person who will not give into his disease
nor be reminded of it at every turn.
It’s not easy keeping up with his optimism,
despite being 13 years his junior; but deep down, I
know this is what sustains me through moments of joy
and weakness—a gift no one but Marty could give me.
Darcy Heller Sternberg lives
in New York City where she teaches public speaking
at the Borough of Manhattan Community College (part
of the City University of New York). Her essays have
appeared in The New York Times, The Plain Dealer
Sunday Magazine and The Litchfield Times.
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