KATHLEEN GALLIGAN/DFP
Harold, 85 and Marion, 86 Weisberg spend their days together although Marion no longer recognizes Harold as her husband in West. Bloomfield Township. Married in 1947, Alzheimer's has robbed Marion of more than 60 years of memories together with Harold.
(DETROIT FREE PRESS) -- "I don't consider her an interruption in my life. She is my life." -- Harold Weisberg, speaking of Marion, his wife of 65 years.
He
courted her for three years, walking her to the theater on warm nights
and bringing flowers and chocolates to her uncle's store. She was the
cashier, he the butcher.
Sixty-five years after she said "I do"
and their friends toasted L'chaim, Harold Weisberg still tries to woo
Marion every day -- even as Alzheimer's disease has erased him from her
memory.
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"Marion, I love you," he says each morning.
She stares at the floor. He is a stranger now, and she -- in the final stages of Alzheimer's -- is a child.
Again: "Marion, I love you."
He said it softly one recent afternoon, cupping his 85-year-old hands around her face until she was forced to meet his gaze.
Finally, nearly inaudibly: "I love you, too."
Snow
fell outside their Bloomfield Township home, and Harold watched as
Marion, 86, shuffled away from him, braced by a caregiver. Today, he had
chosen for her a cheery pink blouse.
"Isn't she pretty?" he said.
Love takes unpredictable shapes, filling the most ordinary moments with exuberance -- and the most sorrowful with strength.
Alzheimer's cases climb
An increasing number of Americans will be asked to find that
fortitude in the coming years as Alzheimer's cases continue to envelop
more families. Last week, a study funded by the National Institutes of
Health and the Chicago-based Alzheimer's Association estimated that 13.8
million Americans will have Alzheimer's by 2050, up from 4.7 million in
2010.
It's unclear how many of those will have spouses caring for
them. But it goes to reason that "people live longer, and that means
they're living longer as couples," said Kate Williams, a longtime social
worker with the Greater Michigan Chapter of the Alzheimer's
Association.
For spouses, Alzheimer's is particularly devastating
as lifetime partnerships dissolve into one-way dependency, said Ruth
Drew, director of Family and Information Services for the national
Alzheimer's Association in Chicago.
"It's a heartbreaking journey for many. There's no sugarcoating that," Drew said.
Agreed
Williams: "People take the vows 'in sickness and in health' very
seriously, and they also feel like no one can take care of (their
spouse) as good as they can. It can be very sweet and very loving, but
it also can be too much."
According to a 2012 report, it's estimated that at least 180,000 Michiganders have been diagnosed with Alzheimer's.
Building a life
"It's about making those little moments meaningful, about savoring
each moment. The stories we hear -- they're very inspiring." -- Susan
Harris, support group facilitator with the Alzheimer's Association
Greater Michigan Chapter.
Their honeymoon to New York after
their November 1947 wedding was short-lived. Harold and his family had
opened the first Chatham Village Supermarket in what is now Harper Woods
-- just seven days before they exchanged vows at the Shaarey Zedek
synagogue in Detroit.
"I said, 'Marion, we can't stay. They need us back. ... I will make it up to you.' She said 'OK.' "
Over
7 1/2 years, they would have four children together. They pushed each
other forward when they lost their fourth, Diane, at 13 to infective
endocarditis, an infection that had lodged under her aortic valve,
revealed only in an autopsy.
Over the years, the family's Chatham
chain would grow to 48 stores. He worked 90-hour weeks at times; she
volunteered at Shaarey Zedek and at Sinai Hospital.
There were graduations and weddings and grandbabies and barbecues on their back deck.
Like
all marriages, things weren't always sunny. Harold could be
strong-willed, stubborn. He had to learn, he said chuckling, that the
only three words as powerful as "I love you" are "I was wrong."
In
retirement, Marion filled their Bloomfield Township condo with art. In
the evening, she cross-stitched in the den while he watched TV there.
In 2002, Marion returned to their home one summer afternoon, parked and announced she could no longer drive.
She
had left hours earlier to buy two books for her grandchildren. Instead,
she ended up 10 miles east of the bookstore, bewildered and struggling
to find her way home.
"She said, 'I have a problem. I got lost, and I don't think I should drive anymore,' " Harold recalled.
The
things they had laughed off before -- that she would lose her purse and
her conversations had begun to loop and repeat -- were no longer funny.
He was scared, he said: "This is my Marion."
Making adjustments
"A hallmark feature of Alzheimer's is the difficulty in doing a
previously learned task -- toileting, brushing your teeth, preparing a
meal."-- Dr. Jonathan Fellows, neurologist, Farmington Hills-based
Michigan Institute for Neurological Disorders, MIND.
Soon after Marion's diagnosis, the Weisbergs signed up for clinical trials and traveled the country to the best doctors.
"I
think my father was always the problem-solver, and he was going to do
whatever he could do to solve this problem," said daughter Cheryl
Weiner, a mother of two and a special education teacher at Orchard Lake
Middle School.
That there is no cure for Alzheimer's? "He didn't think of it that way," she said.
Harold
hoped that a one-page questionnaire several times a week -- known as
the Mini Mental State Examination -- would help keep Marion's mind
sharp, or at least delay the inevitable. The questions were always the
same and the answers came easy at first -- her parents' names, her
children's birthdays.
At the end of the worksheet was the same blank line and the same instruction every day: "Write a sentence."
Dated
Aug. 30, 2010, Marion wrote in her easy, loopy cursive that Harold knew
so well from shopping lists and love letters: "See you later,
Good-bye!!"
The disease progressed, as if moving through the rooms
of her mind, flipping off switches and closing doors as it went. It
shut down her command of the family piano and stripped her of the
ability to make the brisket that Harold loved so much. She was lost in
her own home.
Harold moved her bedroom to the first floor so she
would not wander onto the stairs, and he -- fortunate enough to have the
resources -- was able to hire caregivers to help.
He cleared the closets upstairs of her evening wear and fur coats, stocking them instead with Depends.
In those daily questionnaires, Marion's soft cursive had grown scratchy and tight.
On April 28, 2011 -- when clarity still came in spurts -- Marion was once more instructed: Write a sentence.
It
was one of the last days she would be able to write, and on this day,
the words strayed upward, as though coming unmoored from the inked line
designed to keep them in place.
They read simply: "I will love you forever, Harold."
Sustaining memories
"You treat someone with a type of condition as a one-way street.
They absorb the care. ... Just because they can't respond back verbally
doesn't mean that they're not here." -- Diane Zide, longtime Alzheimer's
educator at Botsford Commons Senior Community.
These days, a
table in the Weisbergs' living room holds neat stacks of crayons and
puzzles and a lavender sachet in hopes of keeping Marion's senses
piqued. Harold helps the caregivers talk with her, play games, flip
through pictures of faces she no longer knows; in the middle of the
night, he is up again online -- trying to find the latest on Alzheimer's
research or sending e-mails to Marion's doctors.
On a recent day,
Harold is jubilant and animated, flipping through black and white
photos and reliving Weisberg stories of streetcar rides and theater
shows and vacations and dinner parties. Many are with friends; she
allowed him that time without complaint, he said. Others are of young
Marion, draped in a flowing wedding gown.
"I still picture her as the cashier. I still picture her on the streetcar. We had a great life," he said.
He is abruptly still now.
Marion
is shuffling past once again, a caregiver maneuvering her toward a
stationary bicycle in the living room where she will sit and gaze out
the window, pedaling to nowhere.
"The hardest thing in life is watching your best friend die," he said.
The
money he spends for caregivers, a masseuse, a physical therapist --
wouldn't it be less expensive for care in a nursing home? he is asked.
The question is obviously ridiculous to him. Insulting.
She
gave him a family and a home. She was his bookkeeper and cheerleader as
he and his family built an empire of stores. She let him travel with
his friends and golf and bowl. She laughed at his stories.
And
Harold? Everyone who knows him well knows of the old man's stubborn
streak -- something that made him prickly at times, said his eldest son,
Aaron Weisberg, an assistant store manager in Arizona. Caring for his
wife even as she slips beyond his reach is "tearing him up," but he will
have it no other way, Weisberg, 62, said of his father.
"He looks
at what she's done, and he knows, 'She did this for me,' " Aaron
Weisberg said. "When he sets his mind on something, he will not give up.
That's the stubbornness of him."
Maybe too, there's that other thing about love: Even in the darkest moments, it offers unexpected flashes of joy.
Though
Marion is confused by this unfamiliar man in this unfamiliar place, she
nonetheless returns Harold's kisses and she squeezes tight when he hugs
her. It still makes him smile, he said.
"We said, 'Till death do us part.' There is no fine print or exception for Alzheimer's," he said.
"Look at her," he said, swiveling his head toward her as she gazes out the window and pedals. "Isn't she pretty?"
Robin Erb, Detroit Free Press Medical Writer