Heartbreak of a long goodbye

S E RV I N G T H E P U B L I C S I N C E 1 878 • W I N N E R O F 1 8 P U L I TZ E R P R I Z E S

Sunday • 12.30.2018 • $4.00 • FINAL EDITION

Ex-staffers: Partnership CEO is in Stenger’s pocket

STOLEN FUTURE

THE HEARTBREAK OF A LONG GOODBYE Families share stories of financial, personal toll wrought by dementia

Sweeney

Stenger

BY JACOB BARKER AND JEREMY KOHLER St. Louis Post-Dispatch

Shortly after the St. Louis Economic Development Partnership named Sheila Sweeney chief executive in late 2015, there was a new face in the Partnership’s offices.

It was John Rallo, a businessman from a family with deep roots in local construction — and, it turned out, one of St. Louis County Executive Steve Stenger’s early campaign donors.

Joe Bannister, the Partnership’s former vice president for real estate, remembers Sweeney pulling him aside to let him know why Rallo was there. “John was a friend of the campaign, so you know, he’s going to do work,” he said Sweeney told him.

Rallo would later win a $130,000 marketing contract from the St. Louis County Port Authority, purchase 43 acres of land from a county See PARTNERSHIP • Page A8

INSIDE: Official alleges Stenger influenced land sale in Wellston that went to donor. Story, A9

CRISTINA M. FLETES • cfletes@post-dispatch.com

Ron Nicoletti, 68, begins to doze off as his wife, Mary, says goodbye after visiting him at a skilled nursing facility in Valley Park this month.

Ron was diagnosed with early-onset Alzheimer’s eight years ago and is now unable to say more than a few words. “It’s hard to realize how devastating this is unless you have been through it,” says Mary.

Slaying of 4 shocks St. Charles subdivision

BY MICHELE MUNZ • St. Louis Post-Dispatch

M

ary Nicoletti, 66, walks through the locked double doors of one of the dementia wings at the skilled nursing facility where her husband lives. She spots him standing at the end of the long hallway, just a thin silhouette against a wide, sunny window.

“Hey, Ronnie! Hi!” she yells. Ron Nicoletti, 68, stares but doesn’t move.

“Do you see me yet?” Mary says. She waves excitedly, walking closer.

Ron finally responds to her, as if she were just getting off an airplane after years away. They’ve been married 45 years, but he no longer knows her name.

“Ahhhhhh,” he bellows, coming toward her. She opens her arms for a hug, and he walks into her embrace.

“I love you!” she tells him.

“Love you!” he blurts.

BY CELESTE BOTT AND JACOB BARKER St. Louis Post-Dispatch

ST. CHARLES • Police received a chilling 911 call late Friday night.

I n a s u b d iv i s i o n o f f Muegge Road with wellmaintained lawns and twocar garages, there was a man with a gun in a house on the 100 block of Whetstone Drive.

On the line, with gunshots audible in the background, was Jane M. Moeckel, 61, who had barricaded herself in a downstairs room with her two grandchildren, Zoe J. Kasten, 8, and Jonathan D. Kasten, 10.

By the time police arrived

See DEMENTIA • Page A14 CHRISTIAN GOODEN • cgooden@post-dispatch.com

Barbara Lewis rests a moment in her University City home this month. Lewis, 88, learned two years ago that she has dementia. She has an appointment with a neurologist next month for testing to determine the cause.

> This is the sixth part in a series about dementia.

Read previous stories. stltoday.com/dementia

SIGNS OF DECLINE Dementia does not discriminate, as these six patients illustrate.

INSIDE • A16-17

See MURDER • Page A5

TODAY

A SENSE OF PLACE

YEAR IN REVIEW

See the winners of our travel photo contest. B1

Boom and bust: The year’s top business stories • C1

47°/37°

Shildt leads list of year’s top St. Louis sports stories • D1

She makes things happen

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45°/30° RAIN

WEATHER D11 POST-DISPATCH WEATHERBIRD ®

Parkland school shooting is AP’s story of year • A11

CITIZEN OF THE YEAR

Natural disasters this year cost $155 billion • A23

Kathy Osborn finds solutions for the region

Obituaries: Remembering those we lost in ’18 • A31

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STOLEN FUTURE

A14 • ST. LOUIS POST-DISPATCH

M 1 • SUNDAY • 12.30.2018

“I just thought he wasn’t paying attention to us; and here he was very sick, and I had no clue.”

— MARY NICOLETTI

PHOTOS BY CRISTINA M. FLETES • cfletes@post-dispatch.com

Mary Nicoletti, 66, dances with her husband, Ron, 68, in his room at a skilled nursing facility in Valley Park this month. Music helps bring back some memories that have been taken by Alzheimer’s disease. Mary says his symptoms started 12 years ago, though they didn’t know what it was at the time. He moved into the nursing facility two years ago.

MOST EXPENSIVE DISEASE IN THE U.S. DEMENTIA • FROM A1

He babbles incoherently. The 1965 hit song “California Girls” blasts though the open door of his room, and he starts to bounce and sway to the music. His five sons made him a digital playlist from the 1960s, which nurses can play throughout the day as he wanders the halls.

“He loves to dance,” Mary says.

She notices Ron is holding a red, shiny ball. “Oh, you took an ornament, you stinker!” she says. He doesn’t notice as she takes it from him and walks around the corner to put it back on a Christmas tree.

Mary holds his hand and leads him out the doors for a walk, but a nurse assistant stops her. “Sorry I’m late,” she tells Mary.

Mary knows she’s come to change Ron’s diaper. The assistant leads him to his bathroom. His wails can be heard from the hallway. “He hates it,” Mary says.

Ron has been in a facility for the past two years. Before that, Mary was taking care of him, trying her best to keep him safe, clean and happy. It was becoming impossible. “One day, he said, ‘Plan B. Plan B. Plan B,’” Mary recalls.

They were fighting. She had become less of a wife and more of a nurse, checking off her daily duties. “He hated it,” she says. “It was his dignity.”

The assistant returns with Ron. “There’s your beautiful wife,” she says, as she hands him over to Mary.

“I believe it,” Ron says, making everyone laugh.

They are the only decipherable words he manages for the rest of their visit that day.

WE ALL HAVE STORIES Statistics show how dementia and Alzheimer’s disease are affecting families across the country. Every 65 seconds, someone in the U.S. develops Alzheimer’s, the most common cause of dementia. That amounts to 5.7 million people.

Over the next six years, the number is projected to jump to 7.1 million as baby boomers get older.

In Missouri, more than 110,000 people over the age of 65 have Alzheimer’s disease. By 2025, the number will be 130,000.

For every person with the disease, an average of three people take on caregiving duties — a spouse, child, sibling, friend or relative.

Alzheimer’s is the most expensive disease in the country, costing an estimated $277 billion this year — including $186 billion in direct cost to government health care programs.

The staggering numbers, however, don’t show the stress and heartache on families.

This year, the Post-Dispatch has written a series of stories about Lonni Schicker, 64, and her son and caregiver, Dan Schicker, 32, as they struggle with the confusing, overwhelming and lifechanging start to memory problems.

The series — Stolen Future — sheds light

An undated photo shows Ron and Mary Nicoletti. The couple started dating when Mary was 15 and got married the summer before her senior year in college. They have five sons. Ron worked at AnheuserBusch and St. Louis Community College, while Mary stayed home with the boys.

“We were one,” Mary says. “There’s no one I like better than him. He’s my guy.”

on the need for better diagnostic tools, care and support — while showing the Schickers finding joy and preparing for what is to come.

For this sixth and final part in the series, other families who have experienced dementia are sharing their stories.

KMOX radio host Carol Daniel knows the importance of talking about these experiences. Her mother was diagnosed with dementia three years ago, and Daniel’s father is her caregiver. This year, Daniel was the emcee for the annual fundraising gala for the Alzheimer’s Association Greater Missouri Chapter.

“We all have stories,” Daniel told the crowd. “They should fuel this fight.”

‘DO I GO THIS WAY?’ The week before Christmas, two deacons from West Side Missionary Baptist Church stop by the home in University City where Barbara Lewis, 88, has lived for the past 53 years.

They visit members who are “shutins” and no longer able to make it to church. They stay for an hour, chatting about past reverends: ones who were there when she was baptized, got married, put her parents to rest. Before the men leave, they give her an envelope.

“They gave me a card,” Lewis says moments later. “I don’t know what’s in it, actually.”

She searches the pockets of the cardigan in her lap, turns it over and searches the pockets again.

“You put it in your purse, Mom,” says her daughter, Rosalyn Stiles, 64. Stiles has lived with Lewis since her own husband died 11 years ago.

Stiles opens the envelope and counts money inside: $75. Lewis knows right

away what she will do with it.

“I had a talk with the Holy Spirit, and I said, ‘I have a little grandson who needs a pair of shoes,’” she says. “I have these funny things happening to me, like somebody really talking to me.”

Lewis has an 11-year-old great-grandson who is growing fast and always active. She had noticed a hole in the toe of his shoe.

“He took the place of my younger daughter. Every time I turned around, she ran out of her shoes,” Lewis said.

“She was always stomping around on the Ferris wheel.”

“You mean the merry-go-round,” Stiles gently corrects her.

Lewis’ forgetfulness started about four years ago, Stiles says. She insisted people had moved things. The church sermons were confusing. She left ingredients out of her pies and cakes. She got her bank account number confused with her Social Security number.

Two years ago, her primary care doctor confirmed Lewis has dementia. She’s meeting with a neurologist next month for more extensive testing to determine the cause.

“Hopefully, the doctor will come up with the words for the exact condition I am,” she says. “I want to work as hard as I can possible to do it, to see if I can turn it around or keep it from getting worse.”

Lewis has quit driving. And she’s quit what she has always been so good at: cooking.

“Before Thanksgiving, I tried to make a sweet potato pie, and I made the biggest mess,” she says. “When I have to add a lot of different seasons (sic), I get confused.

I stand in the middle of the kitchen floor, and I think, do I go this way or that way?”

SYMPTOMS WILL WORSEN Dementia is a collection of symptoms that occur when the brain regions that control thinking begin to deteriorate because of disease. The symptoms are severe enough to prevent a person from carrying out daily activities.

“All of this begins gradually, and it’s hard to know for certain whether memory or thinking are declining, but it always gets worse,” said Dr. John Morris, director of the Knight Alzheimer’s Disease Research Center at Washington University School of Medicine. “With time, there will be continued deterioration.”

About 75 percent of dementia is caused

by Alzheimer’s disease, marked by the buildup of plaques. Other brain disorders also cause dementia, including stroke, frontotemporal dementia and Lewy body disease.

Dementia-like symptoms also can be caused by dozens of reversible conditions such as depression, drug interactions and thyroid problems.

Often, the causes can be mixed.

Dementia is progressive and fatal. It is a long goodbye. People tend to live about 10 years after diagnosis, Morris said.

What starts out as repetitive questions, miscalculating numbers, leaving out ingredients and minor fender-bend-

ers evolves into no longer working, paying bills, cooking or driving.

Patients can become irritable, angry or paranoid.

Eventually, even figuring out how to dress, comb their hair, brush their teeth or go to the bathroom becomes impossible. “The end stage will require total care,” Morris said. “The person won’t be able to do anything.”

Advances are unfolding in accurately diagnosing, treating and even preventing dementia. Researchers are studying how to harness the power of the immune system and use drugs to delay the start of brain deterioration, which they have learned begins 20 years before the symptoms of dementia appear.

This year, Congress approved the largest-ever funding increase — $425 million — for Alzheimer’s and dementia research. The increase brings the total annual funding to $2.3 billion, up from just $448 million seven years ago.

“We have to invest in these research studies and diagnostic tools to be able to one day say we have something to stop Alzheimer’s disease,” Morris said, “or else it’s going to overwhelm our health system.”

‘WE WERE ONE’ As Mary and Ron Nicoletti walk out of the dementia wing into the common areas of Garden View Care Center, they pass a large glass enclosure full of small, colorful birds.

“Want to look at birds for a little bit?”

Mary says.

Ron keeps shuffling down the hall, eyes forward. “No? OK,” Mary answers for him. “We can just be together.”

They started dating when she was 15½ years old, breaking her no-datingbefore-16 rule because her parents liked Ron. Mary went to Cor Jesu Academy and Ron went to Christian Brothers College High School, but they were in the same parish, Our Lady of Providence, in south St. Louis County.

They continued dating in college, while Ron went to St. Louis University and she attended Fontbonne University.

They got married the summer before their senior year.

“We were one,” Mary says. “There’s no one I like better than him. He’s my guy.”

Ron worked 22 years in human resources for Anheuser-Busch before becoming the director of human resources for St. Louis Community College. “He loved to help people get jobs,” Mary says.

He loved to play the guitar.

Mary’s work was taking care of their five boys. She and Ron were avid Cardinal fans. “That’s what we did together,” she says. “We had season tickets for years.”

Ron was diagnosed with Alzheimer’s eight years ago at age 60. Mary says symptoms started about four years before that, but she did not understand what was happening at the time.

“I was just ignorant,” she says. “I had See DEMENTIA • Page A15

STOLEN FUTURE

12.30.2018 • SUNDAY • M 1

ST. LOUIS POST-DISPATCH • A15

“I want to work as hard as I can possible to do it, to see if I can turn it around or keep it from getting worse.”

— BARBARA LEWIS DEMENTIA • FROM A14

no idea that someone at that age could have problems mentally.”

He was spending long hours at work, struggling to keep up. He was not paying bills, blaming accounting mistakes on everyone else. Mary was hurt.

“I thought he was so busy at work, and he was ignoring his family,” Mary says. “He had an MBA in finance. I just thought he wasn’t paying attention to us; and here he was very sick, and I had no clue.”

His boss’s concerns led Ron to seek help. First, he was tested for depression.

Six months later, doctors confirmed Alzheimer’s.

Ron had made so many accounting mistakes that he lost their dream home in Tapawingo golfing community surrounding the golf course in Sunset Hills.

“We had a big house. We had everything,” Mary says, “and it all went kaput.”

TRYING TO BRING JOY Lewis’ husband, an Army veteran and electrician, died 36 years ago. She has five children, including three daughters who live in the St. Louis area. All three try to keep her as involved as possible.

Carlotta Lewis, 65, includes her mom in her event-planning duties — arranging flowers or folding napkins. Paula White, 59, brings her dog for visits. Lewis goes to a senior center for activities three times a week, and sometimes plays bingo, even if it’s just one card.

They patiently play her favorite card game, bid whist, laughing through her mistakes.

“We do whatever she wants,” Stiles says. “We try to bring joy in her life and be creative with her.”

The elder Lewis says her children have talked to her about her wishes. “Do I want to continue to live in the house or self-service, or that’s not the word … assisted living,” she says. “I’d like to stay in my house; but every time I turn around, something is falling apart or needs to be repaired, and I don’t want to deal with that.”

A few weeks ago, Lewis was briefly home alone when she thought men were in her house. They were cussing, kicking in walls and preparing for a gunfight.

She called the police and walked with her walker to a longtime neighbor’s house.

Her family thinks maybe she thought a television show was real.

As she sits at her dining room table with Carlotta Lewis, peeling price tags off charger plates, she tells her daughter

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Barbara Lewis (right), 88, shares a laugh with her daughters Rosalyn Stiles (left) and Paula White this month as they have her sign her name to Christmas cards in her University City home. “We try to bring joy in her life,” Stiles says of her mother, who has dementia.

that she can’t stand the thought of her children being handicapped by her.

“I am not interested in what is best for me but what is best for my family,” she says. “They are all getting up there in age, too, and they need to enjoy life to the fullest.”

Carlotta Lewis takes a plate from her mom.

“We are. We have,” she tells her. “Part of our joy is seeing you get what you need.”

LIKE SAND After losing their home, the Nicolettis rented a small house, but even that became too expensive. Mary is thankful that Ron’s brother, the executor of their mother’s trust, let them live in her house in the Affton area — the house Ron grew up in.

Two years ago, when it became impossible for Mary to care for Ron, she placed him in a skilled nursing facility. He had to move from that facility into Garden View

when a urinary tract infection caused him to act aggressively, Mary said. He has to have a private room.

Using his two pensions, retirement savings and her mother’s inheritance, Mary pays $317 a day for the room.

She could apply for Medicaid, the government health program for the poor, but that means Ron probably would have to move to another facility. She worries about spending their savings.

“I could live 20 more years,” she says.

“I don’t know what I’ll do.”

They had all kinds of retirement plans, especially because their first child came just over a year after they got married.

“He wanted to go to Sicily to walk the streets his grandparents walked,” she says. “We always thought we would have time later.”

This year, Mary went through surgery and treatment for breast cancer. She had a gallbladder attack. She couldn’t even tell her husband.

Mary visits Ron nearly every day. She

lives for the moments when he grins, when he seems to recognize her.

After passing the bird enclosure, they head to the administrative offices. The chairs and desks used to spark something in Ron. He enjoyed checking on the employees, like he was back to his corporate self. Today, though, he is quiet.

“Ron, are you tired?” Mary asks, but gets no response. He nods when an employee offers some chocolates, but he just stares at them when she opens the box.

“It’s like holding sand and watching it go through your fingers,” Mary says.

“I know I’m losing the battle to hold on to him.”

Some people tell her she shouldn’t bother coming any more.

“But he knows when I’m here,” Mary says. “He knows he’s loved.”

Michele Munz • 314-340-8263 @michelemunz on Twitter mmunz@post-dispatch.com