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Early Alzheimer’s Hardens the Blow

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HARTFORD COURANT

In the photograph, Marge Cimiano stands in the middle of her building lot, holding a sign that says “front entrance.” On that summer day in 1996, Bob Cimiano took picture after picture of his wife, trying to capture an image of the future they envisioned when they designed their Tolland, Conn., dream house.

Marge, then 50, seems to be looking past the camera at another future, however, perhaps the one her doctors had laid out for her two months earlier when they told her Alzheimer’s disease had already begun to strangle her mind.

Her expression is as vacant as the building lot behind her.

Today, the walkway to the front entrance of Marge’s dream house is sealed by a gateless white fence, installed to keep her from wandering off in the depths of her dementia.

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Last spring, Marge was asked how she feels about her house.

“I like it, but sometimes . . .” her words stopped, a thought falling into an abyss.

Marge, now 55, is fast forgetting her family. They, in turn, are trying to find the right words to round out her life story and pin down their own place in it. Each member of the family is developing mental pictures of a wife, mother or sister whose own memories are being relentlessly and irrevocably erased.

“I was the type who bought film but never put it in the camera. After the diagnosis, I started taking pictures like crazy,” says Bob Cimiano, 56. “I wish sometimes I could just bottle memories and store them, so they’ll be there when I want them.”

The Cimiano family is living through a nightmare only dimly perceived as a threat by people in midlife--the early onset of Alzheimer’s disease.

In the mistaken belief that dementia afflicts only the elderly, the family members, friends and even doctors of middle-aged patients tend to dismiss its warning signs--the repeated questions, the forgetfulness. Yet, 5% to 10% of the 4 million Americans who have Alzheimer’s are younger than 65, a percentage that will probably increase as the baby-boom generation ages.

Early onset Alzheimer’s is distinguishable from the more common late-onset form chiefly in the speed with which it attacks the minds of its victims, who live an average of eight years after diagnosis.

However, the financial and practical consequences of Alzheimer’s differ dramatically when the patient is younger. Those who care for their afflicted husbands or wives usually work. They have little alternative but to leave their loved ones at home unattended. They live in fear that their spouses will get lost, find hidden keys and go for a catastrophic drive, burn their hands on a hot stove. Some also have school-age children. Because the patients are younger, there is little state and federal assistance to help with home care unless they are impoverished.

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There is no cure for Alzheimer’s, no matter when it strikes. Scientists are just beginning to identify some of the biochemical chain reactions that create the thick plaques and tangles that snake through the shrinking brains of the afflicted. Although some drugs may slow progression of the disease, scientists still don’t know how to keep Marge Cimiano’s memories from dying.

Five years ago, Marge and Bob began to firm up their plans to move out of their rambling Colonial in Ellington, Conn.

Kim Field, their older daughter, had moved out of the house, and Allison Cimiano was getting ready to go to college.

Marge and Bob wanted to build a large single-floor home near Bob’s packaging-equipment business. They joked that they wouldn’t have to navigate stairs in their dotage. In their late 40s at the time, they still were young enough to want a hot tub to snuggle in.

Only now can the family see that Alzheimer’s stealthy footprints were already at their front door.

Allison, now 25, remembers getting angry when her mother asked for the third or fourth time during a visit home from college, “When are you coming home to live?”

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Kim, 33, remembers wondering whether her mother’s apparent absent-mindedness might be related to her vegetarian diet.

Bob noticed Marge seemed more distant. He harbored a nagging thought that their marriage might be becoming stale. When she repeated her queries more than once, Bob says, “I just kept answering her questions.”

Marge’s sister, Jackie Dever of Cape May, N.J., says she became suspicious something was wrong in 1995 when she underwent lung surgery and Marge didn’t come to visit.

But their mental images of Marge could not bend enough to accommodate the idea that the 50-year-old woman might suffer from dementia.

Growing up in Philadelphia, young Margaret DeFrancis was extremely health-conscious, Jackie says, and as an adult, Marge did not smoke, drank little and read the latest medical news avidly.

Marge might have appeared more withdrawn, but then, she always prized her privacy, her daughters say.

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“She was a wonderful mother. She didn’t want to intrude,” says Allison, who switches between the past and present when she talks about her mother. “She had perfect balance, the qualities you want in a mother, the qualities you want in a friend. She is honest, trustworthy. You could tell her your deepest, darkest secrets and you knew she wouldn’t tell anyone.”

Petite, with almost elfin features, Marge was vigilant in warding off signs of encroaching age.

“You’d never catch my mother out of the house without makeup,” says Allison, adding that a trip to the store would prompt an hour’s worth of preparation.

It was Jackie and another sister, Betty Stanford, who finally saw Marge’s decline clearly. After visiting Connecticut together in the spring of 1996, they compared notes.

Jackie then called Bob.

Bob took Marge for diagnostic tests. The results showed she was suffering from Alzheimer’s disease.

Allison remembers collapsing in hysterics when her mother told her with dry eyes about her disease and inevitable fate.

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Jackie came up from New Jersey and cornered her intensely private sister.

“She was always my baby sister, and very precious to me,” Jackie says. “I wanted to know her feelings, I wanted to know her fears. She knew what was going to happen.”

Last Glimpse of Marge Before Illness Takes Over

Jackie says that Marge told her how proud she was of her daughters and said she was confident that they would be able to take care of themselves. But she worried that no one would take care of her cat, Snickers, and her beloved yellow Labrador, Teddy.

“Her wish was that she would rather not be here than be in the state she is in now,” Jackie says. “I don’t think she knew when she was slipping away. It just takes over. You are not aware that you are so much worse than you were the day before.”

Marge and Bob went ahead with their plans to build the house. Marge, however, lost interest in the project. Quietly, Bob began adding safety features in preparation for Marge’s decline.

When they were cleaning out their Ellington home for the move to Tolland in the spring of 1997, Bob and his daughters found the first of her notes.

Eventually, they found steno-pad pages stuffed in the pockets of her clothes, the glove compartment of her car, her dresser. Some notes were written directions to friends’ houses or stores, or to the new house, places she had visited dozens of times. Others were notes to herself about when she fed Teddy. The dog had ballooned from 90 pounds to 105. Bob says Marge would forget she had fed Teddy and kept putting out more food.

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The family’s biggest surprise came when Bob took Marge to a neurologist for additional testing. The doctor took him aside. He said the hospital records showed that Marge had come to the hospital and requested an MRI and CAT scan to look for problems back in 1993, three years before her diagnosis.

A visitor does not immediately see the fingerprints of dementia on Marge’s dream house, but they are there, dozens of tiny memorials to the banality of living with someone who has Alzheimer’s.

The white fence that extends gateless across the entrance to the front door is the most jarring. Bob went to great lengths to ensure that the curving flagstones leading to the front of the house seamlessly fit together, without the tiniest ridge. Alzheimer’s robs its victims of depth perception, and even the smallest flaw in a surface seems to loom as large as a cliff.

Hidden behind glasses and coffee cans in a kitchen cabinet is a switch that disables the microwave. Alzheimer’s patients do not react quickly to heat, and have been known to microwave metal cups and hold them until their skin melts.

Speakers in every room of the house play the same radio station. Alzheimer’s patients become agitated by sudden changes in sound. When Marge wanders, the lulling sounds of soft rock keep her company.

The nozzle of a garden hose rests in the baseboard of the bathroom wall. Many Alzheimer’s patients shy away from stepping into a bathtub the way a horse rears at a rattlesnake. Marge is slight but so strong that family members could not force her into the tub.

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Sitting on a metal stool in the middle of the bathroom, Marge is washed with a portable shower head. The garden hose is pulled from the wall and drains water from a white plastic catch basin set under the stool.

In the weeks after Marge’s diagnosis, the immediate family rallied around Bob.

Marge seemed to particularly like visits from Kim’s husband, Tim Field.

Kim speculates that even today when Marge looks at Tim she sees a younger Bob, with full dark hair.

“He always gets a smile out of her,” Bob says.

But the stress of Alzheimer’s on the Cimiano family has built slowly during the last four years, like tectonic plates moving along a geographical fault line.

Earlier this year, the pressure became unbearable.

Marge’s Physical Health Starts Going Downhill

Two days after last Christmas, Marge had a major seizure. Bob was afraid she would die.

Instead, the trauma rolled back her disease by years.

Marge finished her sentences, recognized family members instantly, became aware of her surroundings.

The respite of clarity, however, receded like a tide rushing out to sea.

“Every day, she’d lose another month,” Bob recalls.

Marge had a series of minor seizures, this time without the positive side effects, and a prolonged fever.

Bob surrendered.

In March, he hired Hazel Reid, a health aide, to live in the house and care for Marge. He moved his wife out of their master bedroom and into the bedroom next to Hazel’s.

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Now it is Hazel Reid who wakes up at 2 a.m. and talks to Marge in a soothing Jamaican accent as Marge walks, and walks and walks.

Marge spends most of her days pacing. With Hazel firmly holding her by the elbow, Marge shuffles and stares at her socks, chin locked against her throat, a side effect of the medication she takes to prevent hallucinations.

But it was the moments when Marge caught a glimpse of reality that were worse than any waking nightmare, he says. Marge would look into his eyes and say over and over again, “Something’s wrong. Something’s wrong.”

“She knows,” he says. “And there is nothing I can do about it.”

Research suggests that people who remain active intellectually tend to be less likely to develop Alzheimer’s disease.

These “use-it-or-lose-it” studies irk caregivers such as Bob because they suggest that their loved ones succumbed to the disease through some failing of their own.

When he ponders the whys of his wife’s disease, Bob suspects head injuries played a role. In October, a study of World War II veterans showed that those who had suffered severe head traumas were four times more likely to develop Alzheimer’s.

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Bob notes when Marge was 3, she required hospitalization after she cracked her head on an end table.

For now, science offers little help to people such as Marge. Although drugs such as Aricept and Cognex may help slow the progression, they only delay the inevitable. In the late stages, many Alzheimer’s patients simply forget how to swallow, and die.

And science hasn’t told Bob how to prepare for that.

The family photo albums always remain open now, photographs spread over a table in their den. Marge’s daughters like to look at pictures of their mother and laugh at the changes of fashion reflected in her blue eye shadow, long false eyelashes or brown wig.

They are fixing the Marge they knew in their memories, hanging mental portraits of her in their minds. Yet they crave the rare moments when Marge still seems to know them.

In September, the family gathered for Marge’s 55th birthday party and urged her to blow out her candles. She never did. She had forgotten how.

Bob knows only one thing for sure about his own future.

“When Marge is gone,” he says, “I will get as far away from this house as I can get.”

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