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One stroke, two survivors
By: ELLEN HARRIS Contributing Reporter
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| Herb Kleiman uses an electric chair lift to negotiate the stairs in the couple’s two-story home.
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Shaker Heights couple chronicles journey through devastating illness
It
should have been just another pleasurable summer weekend at
Niagra-on-the-Lake for Berenice and Herb Kleiman, one of many visits
the Shaker Heights couple had enjoyed there during their 38-year
marriage. On that Sunday morning in
July 2001, Herb, 66, stepped into the shower before dressing to join
the other guests for brunch at their B&B. Berenice remembers
thinking, “He’s taking an awfully long time.” As her husband stepped
out and started talking, Berenice realized he was slurring his words.
“Oh my God, he’s having a stroke!” she told herself, racing to get aspirin and ward off further symptoms.
Berenice
was faced with an agonizing decision, one that still haunts her four
years later. She knew Herb’s best chance for survival was to get to a
hospital within the next few hours and receive a clot-busting treatment
that could ward off a major stroke. Berenice could drive Herb to the
small com-munity hospital nearby, which might or might not offer the
most advanced treatment. Or she could rush him to a hospital in
Buffalo, bypassing the Canadian medical system. A third option was
racing back home to The Cleveland Clinic, where Herb could be cared for
by its experienced physicians.
So begins the Kleimans’
extraordinary story, One Stroke, Two Survivors, which has just been
published by The Cleveland Clinic Press. Written by Berenice with
extensive comments by Herb, it is a no-holds-barred account of their
attempt to battle a bureaucratic medical system, a comprehensive
“how-to” manual for caregivers, and ultimately, as Herb says, “a love
story.”
Berenice rushed Herb back to Cleveland, keeping one eye
on the clock and the other on her husband, now behaving normally. When
they arrived at the Clinic’s emergency room, however, a staff member
decided Herb’s symptoms had actually begun the previous day and
concluded it was too late to administer the clot-busting drug. Herb and
Berenice languished in the ER for hours until he was finally taken for
a CAT scan and admitted.
Doctors told them Herb had suffered a
small stroke but would likely make a reasonable recovery. They were
wrong. As the hours passed, Herb became increasingly sluggish, a change
Berenice had to point out to medical personnel.
“Then things began to happen,” she says.
Herb
was transferred to an intensive-care unit and hooked up to monitors.
Reassured that he seemed more alert, Berenice dashed home to take her
own needed medicines. When she returned, she “could see something was
terribly wrong. He didn’t respond when I tried to wake him … he had no
leg or arm movement.”
Frantic, she alerted the
staff. Herb was rushed for more tests that revealed his stroke was
spreading rapidly. Doctors recommended a high-risk brain stent
operation to help clear his blocked arteries. As Berenice waited during
the agonizing hours of surgery, she made a pact with God.
“I
silently entreated (Him) to return Herb to me ... Send him back in
whatever condition, and I promise to take care of him,” she vowed.
Herb
survived the life-and-death surgery with mental faculties intact, an
outcome Berenice credits, in part, to the countless prayers of
relatives and friends. But her exultation was short-lived. The stroke
that had paralyzed Herb’s right side had also decimated their lives.
When
Herb finally came home, he could not sit up or turn over by himself,
stand, or tend to his toileting needs. A brilliant communicator, who
wrote his doctoral dissertation about the origins of the first
microchip, he was unable to speak audibly.
Until now, the couple had
been equal partners in marriage and in a flourishing corporate
marketing/strategic planning business. Now, Berenice was her husband’s
medical adviser, chauffeur, financial manager and caretaker, and he was
her recalcitrant patient.
Herb’s prognosis was guarded. Nearly
half of all male stroke patients suffer a recurrence within five years,
and Herb’s risk was significantly higher because of his diabetes. He
needed to begin rehabilitation immediately, doctors said, because most
of his progress would occur in the next few months.
Weekend from hell
Throughout
One Stroke, Two Survivors, Berenice recounts her struggle to deal with
the nuts-and-bolts of caretaking. She provides detailed advice on
everything from safely transferring a patient from a wheelchair to a
car to organizing a system to dispense dozens of pills each day n all
stemming from her own experiences.
Some of the worst moments are
described in her chapter “The weekend from hell.” After spending seven
weeks at The Clinic and at MetroGeneral Hospital for rehabilitation,
Herb came home for a disastrous 24-hour trial visit.
The
Kleimans’ son Steve, who had moved back home temporarily to help his
parents, designed and built some adaptive equipment for the couple’s
large, two-story house. But the chair lift they ordered for the stairs
failed to function at first; the new diabetes monitor was defective;
and Herb required constant nursing care from Berenice and Steve, who
were terrified he would fall each time they tried to help him up. At
last, Berenice says with grim understatement, “We recognized the
immensity of our challenge.”
When Herb came home for good,
friends and family rallied to help, and Berenice found two dedicated
part-time caregivers to relieve Steve and her from their 24/7 duty.
Spending money that had been earmarked for their retirement, the
Kleimans’ life began falling into a predictable routine of medicines;
exercise; physical, occupational and speech therapy; and doctors’
appointments. Herb made slow but steady progress, and Steve finally
returned to his own home.
But then Herb suffered another medical
crisis after complaining of pain in his left arm, a recurring symptom
doctors had dismissed earlier. During an angiogram, a Clinic
cardiologist discovered Herb had several blocked arteries in his heart
and informed Berenice he needed immediate bypass surgery.
Moments
later, Herb went into cardiac crisis. With no time to prepare him for a
lengthy operation, surgeons used stents to open the blocked arteries.
It was a temporary solution, they emphasized. Herb would probably
suffer a heart attack within two months and then require a quintuple
bypass.
Shocked by the news, Berenice consulted a prominent
cardiologist she had been referred to in Baltimore. Upon examining
Herb, the doctor counseled a “wait-and-see” policy. The cardiologist
found other factors complicating Herb’s recovery, stressing that he
needed to be more closely monitored by his hometown doctors. This
specialist still plays a key role in Herb’s treatment.
The
experience made Berenice more vigilant than ever in overseeing her
husband’s care. When Herb first got sick, a well-meaning social worker
had advised her to stop asking so many questions. “Relax and go with
the flow,” she was counseled. “Do what they tell you. (Keep in mind)
health care doesn’t run like a business.”
It was like waving a red flag in front of Berenice.
“Of
course, it’s a business. I told her I managed businesses,” Berenice
recalls. “I was not going to submit to someone else’s orders without
understanding the reasons.”
In her customary fashion, Berenice
took matters into her own hands, selecting one local physician to be
Herb’s internist/case manager, with everyone else reporting to him n
and sending all reports to both Berenice and the Baltimore cardiologist.
“You
cannot get sick today without an advocate by your side,” she declares.
“No one will bang heads together for you. You learn to shove that
nurse’s cart right through the window if no one comes.”
Emotional burnout
Berenice
and Herb are remarkably open in describing how the stroke has affected
their relationship. Herb mourns his loss of independence.
“I
knew I would be a bear to live with; the deprivations were so severe,”
he says. “I wondered how she would react to me now that I was less of a
man.”
Overwhelmed by new responsibilities, Berenice was consumed
with anger and guilt. “I missed my husband, my lover, my partner, my
best friend,” she says. “I was angry with The Cleveland Clinic for
allowing (what they called) a ‘small stroke’ to become a massive
wipeout. I was angry that they failed to identify Herb’s rapid
deterioration. I was angry at MetroHealth for inadequate nursing care.
I was deeply angry at Herb for his casual acceptance of diabetes and
its corresponding risks … At the bottom of it all, I blamed him.”
Her
resentment was compounded by Herb’s behavior. “With (outside)
caregivers he was fine; with me, he was selfish, irritable, silent.
When he wanted something, he would point. When he wished to be alone,
he would wave me away.”
From the beginning, Berenice had
insisted on including a rehabilitation psychologist on Herb’s medical
team. Finally, with continued therapy, the couple realized they each
had different ways of expressing their frustration.
Returning to ‘normal’
Gradually,
Herb’s acerbic wit and ability to communicate reemerged. His speech is
slower, but he uses expressive gestures and facial expressions to help
get his point across, reaching out and touching his listener with his
left hand. He has begun talking at public forums about his illness.
Once
a prolific writer, Herb continues to express his iconoclastic opinions
by pecking out the words on his computer with one hand. He has even
written controversial op-ed pieces that have appeared in Crain’s
Cleveland Business.
He and Berenice have resumed taking
humanities classes at John Carroll University and attending theater and
concerts. With the help of friends, they have continued taking weekend
jaunts to their beloved Shakespeare and Shaw festivals in Ontario and
traveled to Manhattan to revisit some of their favorite haunts.
Even
so, every day is a challenge. Last year, Herb had a devastating fall in
the garage, landing face down on the cement as the result of a
momentary distraction. Still primarily confined to a wheelchair, he
spends several hours each day in therapy. Herb also continues to battle
depression, compounded by ratcheting facial pain brought on by the
aftermath of the stroke.
Berenice has found ways to alleviate
some of her caregiver’s stress (her favorite quick-fix is chocolate!);
vacationed with friends; and returned to playwriting, one of her
passions. Nevertheless, she is constantly alert for the slightest
change in Herb’s condition. The persistent stress has played havoc with
her own health.
Given similar circumstances, “some people would
just give up and have him go to a nursing home,” says Berenice. “We had
to fight back because we love each other. That’s where the strength
comes from.”
“Our life was turned upside down in a few days,”
says Herb. “That’s why we wrote this book n to tell you, ‘Don’t wait.
Take your pleasures now.’ What happened to us could happen to you.”
Ed. note: This story is based on personal interviews with the Kleimans and brief quotations from their book.
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