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SEEKING ANSWERS TO MEMORY LOSS PROFESSOR’S LIFE IS UPENDED BY DEMENTIA

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker drives to her part-time job in Ballwin in February. Lonni moved back to the St. Louis area after a diagnosis of mild cognitive impairment. She has since given up driving.

screen — waterfalls, creeks flowing over rocks and leaves waving in sunlight. § Lonni Schicker, 63, took out a

EDITOR’S NOTE: This is the first part in an occasional series about dementia. INSIDE: A diagnosis can be difficult to get. A12

S

he was the only patient in the small waiting room at Mercy Hospital. Calming scenes played on a small television

BY MICHELE MUNZ St. Louis Post-Dispatch

new journal and started writing in neat cursive: Seeing shadows. Paranoid. Lose balance. Can’t count change. Can’t remember email or text. Think Dan is tired of caring for me. § She’s about to see a neuropsychologist who is going to spend the next nearly four hours administering verbal and written tests for dementia. She wants to make sure she tells him everything. § Lonni hopes that this time, she finally gets answers. She’s lost so much — her job as a college professor, her independence, her resilience.

See LONNI • Page A10

Split in SIU system would shake up funding Lawmakers mull bill; growing Edwardsville campus seeks more resources BY MIKE FAULK St. Louis Post-Dispatch

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cus Agustin spends a lot of time inside the student fitness center at Southern Illinois University Edwardsville, but he’s no gym rat. Agustin and other faculty have been crammed in the gym facility for four years while waiting for construction on new classrooms and offices to be finished. The process was supposed to take two years, but Illinois state budget cuts doubled the time frame. “But the good thing is our group is the most athletic faculty now,” Agustin said. That cramped feeling in Edwardsville, made possible by its steady growth, is conspicuously absent at Southern Illinois University’s flagship campus

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CAUGHT IN THE GRAY AREA

TYPES OF DEMENTIA Alzheimer’s disease • Marked by clumps of beta-amyloid protein (plaques) and twisted strands of tau protein (tangles) in the brain. Early symptoms are often difficulty remembering recent events or names, apathy and depression. Vascular dementia • Occurs from damage to the vessels that supply blood to the brain. Early symptoms include impaired judgment or ability to plan or organize. Lewy body dementia • Caused by abnormal clumps of the protein alpha-synuclein called Lewy bodies. Lewy bodies are also seen in the brains of people with Parkinson’s disease, but they first appear in different parts of the brain. Initial memory loss tends to be accompanied by sleep disturbances, hallucinations, slowness and imbalance. Mixed dementia • Abnormalities of more than one cause of dementia. Frontotemporal dementia • A group of diseases characterized by the breakdown of nerve cells in the frontal and temporal lobes of the brain, areas generally associated with personality, behavior and language. Other conditions that can cause dementia include Huntington’s disease, Parkinson’s disease, traumatic brain injury, Creutzfeldt-Jakob disease and WernickeKorsakoff Syndrome. Causes of dementialike symptoms that can be reversed include: infections and immune disorders, metabolic problems, nutritional deficiencies, reactions to medications, depression and brain tumors. Compiled with information from the Mayo Clinic and Alzheimer’s Association

DEFINITIONS Mild cognitive impairment: When problems with memory, language, thinking and judgment are greater than normal age-related changes. Problems aren’t severe enough to significantly interfere with daily activities. A person with mild cognitive impairment is at increased risk of developing Alzheimer’s or other dementia. Dementia: A group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Dementia involves damage to brain cells, and it can progress differently depending on the area of the brain affected.

WARNING SIGNS • Memory loss that disrupts daily life • Challenges in planning or solving problems • Difficulty completing familiar tasks • Confusion with time or place • Trouble understanding visual images and spatial relationships • New problems with words in speaking or writing • Misplacing things and losing ability to retrace steps • Decreased or poor judgment • Withdrawal from work or social activities • Changes in mood and personality

05.06.2018 • Sunday • M 2 ST. LOUIS POST-DISPATCH • A11

Lonni Schicker leaves the Fenton apartment she shares with her son to go to her part-time job at a directory printing company. Until 2014, Lonni was a professor in health care administration at Minnesota State University. She quit after a diagnosis of mild cognitive impairment. She was getting turned around on campus, confusing her classes and forgetting to post assignments.

PHOTOS BY CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker prepares a big holiday dinner on Dec. 17, 2017, as her son Dan sits nearby in their Fenton living room. Cooking the meal is an outlet for Lonni, but she can no longer cook when she is alone for fear she will leave a burner on.

LONNI • FROM A1

Four years ago, at the age of 59, tests revealed Lonni had mild cognitive impairment. Her neurologist wanted to monitor her. Mild cognitive impairment is the gray area between normal functioning and dementia, the progressive decline in thinking skills great enough to hinder daily function. With mild cognitive impairment, changes are serious enough to be noticed but don’t yet interfere with independence. Mild impairment does not always lead to dementia. Sometimes, the condition gets better or stays the same. In other cases, it can be mistakenly diagnosed. But about half the time, it can be the beginning of dementia. That means it will get worse, much worse. Soon after her diagnosis, Lonni felt she could no longer handle the demands of being a professor. She abruptly retired and returned to her hometown to be near family. She moved into an apartment in Fenton with her son, Dan. Lonni’s symptoms have since gotten worse. With limited medical coverage, however, she has been left with more questions than answers. Her Medicare coverage kicked in last spring, providing access to more consistent care. Her new neurologist ordered testing again, which brought her to the waiting room March 5. Neuropsychologist John Wright opened the door. “Lonni?” he said, jokingly looking around. He tries to put patients at ease, especially ones like her, who take pride in their intellect. Because he’s about to challenge it. Though Lonni was eager for answers, she was frustrated. She felt she was starting from scratch. “It just makes me feel so stupid,” she said. “It makes me realize how far I’ve fallen.” The path to a dementia diagnosis is often long and difficult, especially for those under the age of 65, when dementia is less common or in the early stages. Doctors and patients aren’t quick to consider the possibility. With no simple diagnostic tool, figuring out the type of dementia can also be challenging. Alzheimer’s disease is the most common type — 60 percent to 75 percent of cases — but there’s also vascular dementia, frontotemporal and others. Sometimes, patients have a combination of types. Symptoms may not neatly match a certain type, leaving neurologists to make their best guess. Or patients can have dementia-like symptoms caused by treatable conditions such as depression, thyroid problems or vitamin deficiencies. There is no cure for dementia, but early and accurate diagnosis is important. It affects eligibility for research studies and access to support services. Diagnosis determines the likely path of progression and medications. For Lonni, knowledge is power. The teacher in her wants to know why, when and how. “If you’re a patient, you just keep wondering, ‘What the hell is wrong with me?’ You want it to have a name,” Lonni said. “I want to know why my brain doesn’t work anymore.”

ON TOP OF HER GAME Max Collins was one of 120 students Lonni advised as a professor in health care administration at Minnesota State University. When Collins first met Lonni, he was flunking out. She told him to start working hard or quit and stop wasting his time. “But if you stay,” she said, “I will help you.” She created a schedule for him, monitored his classwork and eventually helped him get into graduate school. “She knew what classes I needed to mix together to be able to succeed. She could analyze that and help me balance my life schedule,” Collins said. “She always checked up on me.” Collins, now 29 and a process improvement specialist at

a hospital in Fairbanks, Alaska, credits Lonni with turning his life around. “She was on top of her game,” he said. Former student Samantha McDonald, 29, described Lonni as a professor who could tackle complex topics such as health care finance and use her experience as a nurse and administrator to make it applicable. “Her teaching was layered under the complexities of health care, which is a tangled web, and she took it step by step to make it make sense,” McDonald said. After graduating in 2012, McDonald sought out Lonni as a mentor, all while Lonni was developing a master’s of health administration program for the university. About a year later, McDonald noticed changes. Lonni forgot their meetings for coffee. Her apartment became messy. Her conversations wandered. Lonni seemed overly sensitive, less professional. “She was more emotionally charged than usual, almost in a paranoid way,” McDonald said. “She’d always been passionate, but it felt kind of off-the-rocker for her.” Collins had Lonni as a teacher in graduate school about the same time. She failed to post assignments online. She got the class mixed up with another she was teaching. She didn’t show up. “We would end up texting her, and she would just cancel,” Collins said. “Or she would come to class, and she would be really disorganized and unplanned.” Lonni blamed stress and other health issues. So did he. But some students confronted her. They were worried. Things suddenly became glaring, Lonni said. She got turned around on campus. She lost her spot in a speech about medical ethics that she had given 20 times. “I thought I was just overwhelmed with work,” she said. In late 2013 and early 2014, Lonni was first tested, which involved verbal and written tests. Brain imaging ruled out issues such as strokes or a tumor. Test results showed she had difficulty with high levels of functioning such as organization and planning, and an impaired ability to learn new information. Problems were mild, but her records noted: “Change in cognitive ability to the extent evidenced here … will reduce her efficiency and effectiveness in carrying out her responsibilities as she was previously able (as a professor).” In June 2014, she was diagnosed with mild cognitive impairment. Her neurologist said in his notes that it was unclear whether a “degenerative process” such as Alzheimer’s was responsible. He wanted to see her again in six months. Lonni says he told her he suspected Alzheimer’s disease. The doctor declined to be interviewed for this story. His instructions were: exercise, eat a Mediterranean diet, manage her diabetes, reduce stress, stick with routines, use reminders and “minimize demands on new learning.” He referred her to the Alzheimer’s Association for emotional and educational support. As part of a research study, Lonni underwent a spinal tap to have her spinal fluid analyzed, which could have helped confirm or rule out Alzheimer’s. The sample got lost in transit, she said. Unsure of her future and worried, she decided that fall to return home to St. Louis. McDonald recalls Lonni telling her that people can get through anything if they know how long it will last. But the mild impairment diagnosis unraveled Lonni’s life of organized plans, timetables and checklists. “She felt like there was no end in sight … there were so many unknown things about her health and moving and how to pay for stuff and what was happening to her career,” McDonald said. “It’s the only time I’ve seen her in total chaos.”

SHE USED TO BE A FIGHTER Once she was approved for Social Security disability, there was a two-year wait for Medicare. In the interim, she was on Medicaid, which meant seeing doctors at clinics where she saw a different doctor every time.

COURTESY LONNI SCHICKER

After high school, Lonni Schicker worked as a nurse’s aide and a technician in the burn unit at what was then St. John’s Mercy Medical Center. She completed the two-year diploma nursing program at Missouri Baptist University in 1983. Here she is shown in her graduation picture at age 26.

If you’re a patient, you just keep wondering, ‘What the hell is wrong with me?’ You want it to have a name. I want to know why my brain doesn’t work anymore.” — Lonni Schicker

With a high monthly deductible, her overall health worsened. Neurology residents — doctors in training under supervision — staffed the clinic. She said she felt they were blaming her memory problems on depression, diabetes, sleep problems or medications. “Every time I saw someone different, they gave me a different conclusion,” Lonni said. “It’s almost as if you leave the physician’s office feeling like you’re making it all up, like they distrust what you say.” No one knew what she was like before, how she juggled long work hours, classes and raising a child. No one knew the driven and fiercely independent professor. To her, no one other than Dan understood how her life had completely changed. Dan, 31, has to pay her bills and tell her when to take medications. She won’t cook until he’s on his way home from work, scared she’ll forget to turn off burners. She recently stopped driving. She spends her days inside cleaning, working on crafts and looking up churches for a directory printing company as a part-time job. She’s fragile. A person she perceives as rude brings devastation. Everything — from burning a roast to dirty floors — is a crisis. Last fall, she became so anxious she put herself in a hospital psychiatric unit for three days. “She used to be a fighter. If you disrespected her, she had no problem fighting back. She had no fear,” Dan said. “Now, if she gets a little overwhelmed, she’s in tears.” About a year and a half ago, Lonni began volunteering for the Alzheimer’s Association. She speaks at educational events and fundraisers about her experience and makes calls to others in the early stages of dementia. It makes her feel like a teacher again, like a fighter. When her Medicare coverage began last spring, it took until November to get in to see neurologist Dr. Mohamed Babiker Tom Bakhit, known as Dr. Tom, at Mercy Hospital. He wanted her to undergo testing once again. One early Sunday morning in December, Lonni unraveled. She thought he and others didn’t believe her. She woke up Dan, sobbing. “I’m a fraud,” she said. She should quit volunteering, she told him. She should quit sharing her story. As he always does, Dan calmed her down. “You have dementia. I’m as certain on that as I am of anything,” he told her. “They don’t see you like I have. They haven’t seen you for the past five years.”

HIGHEST-FUNCTIONING FIRST About 16 percent of people in the U.S. age 60 and over — or 11.6 million people — have mild cognitive impairment, according to a new report by the American Academy of Neurology. Studies estimate that an average of 38 percent will

Lonni Schicker talks with her son, Dan Schicker (left), and his friend, Cameron Flood, on Dec. 17, 2017. “She used to be a fighter. If you disrespected her, she had no problem fighting back. She had no fear,” Dan said of how his mother has changed since she began losing her memory. “Now, if she gets a little overwhelmed, she’s in tears.”

develop dementia. Those under the age of 65 face particular challenges in finding answers to their thinking problems, said Deb Bryer, the early onset support services manager at the association’s Greater Missouri chapter. No one is considering that their unusual symptoms could be dementia. Changes in personality along with memory problems are early signs, but they are insidious, Bryer said. “What they are experiencing doesn’t send them running to a neurologist.” Though a diagnosis of mild cognitive impairment can lead to more questions, it is important to recognize. Often an employer is the first to notice changes, Bryer said. The employee starts getting bad reviews or not completing assignments or directions as quickly. Many quit or get fired. “People just think they have lost the ability to do their job well,” she said. People may spend months seeking help for depression until they consider dementia. Divorce and severed relationships are not uncommon, she said. Loved ones don’t understand the odd spending or strange behavior. Some falsely believe the person is lazy and avoiding responsibilities, trying to annoy them or wanting attention. “People usually walk through our door pretty demoralized,” Bryer said. Many do not seek a specialist for testing until dementia becomes obvious: They’ve had several car accidents, wandered off or forgotten names. Dementia tends to affect the highest-functioning parts of the brain first, so it may be more obvious in a college professor versus someone who’s been chronically unemployed, experts say. Dan thinks his mother could have continued to work, hiding her problems. “But she knew she couldn’t give students the best she had,” he said. Tom, her neurologist, said he often saw people in denial, irritated that a family member had brought them in. “I don’t know why I’m here,” they tell him. Then there are people such as Lonni, who know their brain is not the same. “That can be incredibly frustrating,” Tom said. “I can’t imagine how frightening that can be when you are fully aware of your symptoms.” Tom will review Wright’s findings and make a final diagnosis. Lonni knows things still might not be certain. “I will learn to live with it, but I want to do whatever I can to get answers,” she said. “This, whatever is wrong, has destroyed my life.” Michele Munz • 314-340-8263 @michelemunz on Twitter mmunz@post-dispatch.com

INTERACT stltoday.com/dementia Visit us online for more information on types of dementia, how many people are affected and early symptoms.

> Join our Facebook group, Living with dementia, to share your stories, ask questions and seek support.

> Follow the stories on Instagram @stltoday

> Short on time? listen as reporter Michele Munz reads her story

> Questions? Join us for a live chat with Washington University neurologist and dementia specialist Dr. Suzanne Schindler at noon May 10 at stltoday.com/chat. Click on news.

VIDEO Lonni Schicker’s doctorate of education degree hangs in her Fenton bedroom in February, as she works her new job with a local printing company: compiling lists of churches her bosses can contact to pitch offers printing church bulletins. Dementia tends to affect the highest-functioning parts of the brain first, so it may be more obvious in someone like Lonni, who worked as a college professor. Lonni’s son thinks his mother could have kept teaching, hiding her problems. “But she knew she couldn’t give students the best she had,” he said.

> Watch Lonni Schicker and her son talk about the first hints of problems. > Neurologist Dr. Mohamed Babiker Tom Bakhit explains what dementia is and details the types of dementia. stltoday.com/dementia


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THE JOURNEY TO A DIAGNOSIS Mental, physical decline are taking a toll on Lonni Schicker as she struggles with dementia and a future that slips away

Stenger donor sought official’s help with bids Documents raise questions about St. Louis Economic Development Partnership bidding BY JACOB BARKER St. Louis Post-Dispatch

CLAYTON • A major donor to St. Louis

he neurologist asked Melanie “Lonni” Schicker to count backward from 100 by 7. With long pauses, and counting under her breath, she answered: 93, 86, 79, 52, 53, 36. § Lonni was at Mercy Hospital St. Louis in April undergoing testing for dementia with Dr. Mohamed Babiker Tom Bakhit, who goes by Dr. Tom. § Tom had reviewed her extensive neuropsychological testing — mostly pen-and-paper quizzes and questions — which she had completed the previous month. But he was making some of his own observations. § Lonni, 63, has been seeking a diagnosis since her thinking abilities started to decline in 2014 and she became among the millions of Americans diagnosed with mild cognitive impairment, which can often lead to dementia. She ended her career as a professor and moved to an apartment with her son, Dan, 32, in Fenton. § Her problems have worsened since then, especially over the past few months, and she was hoping to finally find out why.

County Executive Steve Stenger sought guidance from the county’s top economic development official before successfully winning two county government deals, public records show. Email correspondence between John Rallo, a donor to Stenger’s campaign, and Sheila Sweeney, CEO of the St. Louis Economic Development Partnership, shows Rallo amended his proposals after first sending them to Sweeney for review. The communication raises questions about the fairness of the Part- Rallo nership’s bid process in these two cases, government procurement experts say. “It may be legal for them to do that, but it’s not good policy,” said Richard Arnholt, a Washington -based lawyer at Bass, Berry & Sims. Sweeney While the Post-Dispatch has previously reported on both contracts, the records produced by the county and the Partnership in response to the newspaper’s Sunshine Law requests offer new details on how they were Stenger awarded and the involvement of Stenger’s office. In the case of a $100,000 marketing contract the St. Louis County Port Authority awarded in 2016 to Rallo’s Cardinal Creative Consulting, the documents show Rallo sent Sweeney his proposal prior to bids being due and then resubmitted it to her the next day with some wording changed. They also show that Sweeney,

See LONNI • Page A8

See BIDS • Page A4

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker takes a moment in her day to peruse her schedule at a Starbucks in Fenton in January.

T

BY MICHELE MUNZ St. Louis Post-Dispatch

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A8 • ST. LOUIS POST-DISPATCH

M 1 • Sunday • 06.24.2018

A DIAGNOSIS CAN BE ELUSIVE

PHOTOS BY CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker gets ready to leave for a trip to the office of Guide Book Publishing in Ballwin in February. Although she usually works from home, she sometimes goes in to the offices in Ballwin to do her searches and to touch base with her boss.

LEWY BODY DEMENTIA Lewy body dementia affects an estimated 1.4 million individuals and their families in the U.S. It is a progressive brain disorder in which protein deposits called Lewy bodies build up in areas of the brain that regulate behavior, cognition and movement. Symptoms include: • Changes in thinking and reasoning • Confusion and alertness that varies significantly from one time of day to another or from one day to the next • Parkinson’s-like symptoms such as a hunched posture, balance problems and rigid muscles • Visual hallucinations • Delusions • Trouble interpreting visual information • Acting out dreams, sometimes violently, a problem known as rapid eye movement (REM) sleep disorder • Malfunctions of the “automatic” (autonomic) nervous system such as blood pressure and bladder control • Memory loss that may be significant but less prominent than in Alzheimer’s Source: Lewy Body Dementia Association and the Alzheimer’s Association

ABOUT THIS SERIES About four years ago, Lonni Schicker’s doctor told her that at age 59 she had mild cognitive impairment. The diagnosis placed her at a higher risk of dementia. She is sharing her story in the hope of helping others. UP NEXT IN PART 3 Fighting back by speaking out LONNI’S STORY Catch up on the rest of the series at stltoday.com/dementia

LONNI • FROM A1

Tom asked her to touch her thumb to each finger. She did so very slowly despite his command to go faster. Her hands trembled when she held them out. She told Tom about her falls. And that she’s seeing things — such as animals — she knows aren’t there. Alzheimer’s disease is the most common cause of dementia, but there are other lesser-known causes. They may differ in how symptoms progress, but they have the same devastating ending: total loss of brain function. Lonni wants to know why her brain doesn’t work anymore. She needs to prepare. She needs to plan. She wants what she has to have a name. Tom concluded that Lonni has progressed to dementia — when decline in thinking becomes severe enough to interfere with daily life — but questions remain. She shows symptoms of Lewy body dementia, the second-most common form of dementia, he told her. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement. But Tom stopped short of diagnosing her with the disease because she did well on her neuropsychological tests. So well, he was able to rule out Alzheimer’s, which would have progressed differently. Her anxiety and depression also could play a role. He wants to monitor her symptoms and see her again in September. “A lot of time, that is the case. A lot of time, it’s difficult to have a definitive diagnosis, especially when it’s in the early stages of process,” Tom said. “I don’t want to jump to any conclusions.”

‘BREAKING DOWN’ The journey to a diagnosis is often long and frustrating, advocates say, especially for those who begin to notice their cognitive impairments before they turn 65, or in the early stages, when dementia is not on the radar or symptoms are not typical. A report by the Alzheimer’s Association found that some people wait as long as six years for a dementia diagnosis, and some receive one or more wrong diagnoses before finally learning they have dementia. Some doctors may not feel confident in diagnosing younger-onset dementia because a myriad of other issues — from hormone imbalances to vitamin deficiencies — can cause dementia-like symptoms. “While we now have very good methods for diagnosing Alzheimer’s disease in patients, there are many other causes of memory impairment, some of which can be difficult to diagnose,” said Dr. Erik Musiek, neurologist and researcher at Washington University School of Medicine. “Some people have memory changes which do not fall cleanly into defined categories, which can lead to a lot of negative testing that can be frustrating for patients and doctors.” Dan said that when he and his mother first moved in together more than four years ago, she seemed to struggle just 10 percent of the time. “The last 1½ years, it’s progressing faster, to where it’s 60-40, maybe even 50-50, where she just isn’t functioning like a normal adult,” he said. “She’s forgetting to do things, breaking down for no reason and just … getting upset.” Tom asked Lonni to remember three words: season, leader and table. After several simple questions, he asked her to recall the words. She struggled for a long 15 seconds. She looked as if she was about to cry. It starts with an “s,” Tom reminded her. “Salt?” she said.

Lonni Schicker pauses a moment as she shops at the Aldi near her home in Fenton in March. Lonni is finding it harder to do everyday chores without constantly making lists. She says it is taking her longer to gather each item on her list.

‘FROM THAT, TO NOTHING’ Lonni wants an answer, but an answer isn’t stopping the changes. She knows she’s not the person she was. And lately, the changes have been coming quickly. In early spring, she was on a familiar road in the middle of the day when she made a turn and ended up driving onto a concrete median. She had been using the OnStar navigation system to guide her everywhere she went, even to her usual grocery store. But there were times when she felt unsure of her surroundings or overly upset by other drivers. She decided to stop driving, leaving her feeling trapped in her apartment. Nights of grading papers, preparing lesson plans and meeting with students have been replaced with watching television with Dan from their recliners. But even that is getting stressful. Lonni forgets plot lines from a season of episodes they just finished watching a few days earlier, Dan said. If a show jumps back and forth, she gets confused. “Oh they are back together!” she’ll say about an estranged couple during a flashback. Dan tries to remind her. He tries to explain. But eventually, he gets frustrated and gives up. “I just stop correcting her,” he said. “I just won’t say anything.” Lonni senses when this happens. She tries not to let it hurt her feelings. “He’s been pretty impatient with me lately,” she said. “I think he kind of ignores me when I ask him something. I ask him questions, and then suddenly he is not answering. But I would be frustrated, too.” It’s hard. Lonni used to be the person everyone went to for answers. She was tapped to write the master’s program in health administration at Minnesota State University, advised 120 students and was a mentor to many. She worked as a nurse and in health care management, all the while raising a child, working toward her doctorate, and being the matriarch and planner for extended family. Her bosses praised her on the LinkedIn professional networking site as someone with excellent analytical skills and attention to detail. “Her dedication to ensuring quality outcomes, ability to manage her time effectively while multi-tasking various assignments, and remaining results-oriented to meet margins was commendable,” wrote her manager at Centene Corp. Now her weeks are spent working a part-time job, looking up information

about churches for a company that publishes church directories. It takes two hours for her to put the information into a spreadsheet, a task that would have taken her 30 minutes just a few years ago. She’s never been “artsy,” she said, but she makes earrings, and knits hats and blankets. She cleans obsessively. She can’t stand being idle, being alone. All her life, when depression threatened, she buried herself in work, but that is harder now. “I was always incredibly busy,” she said, “and I went from that, to nothing.” Lonni used to make a list of what she needed to do the next day. She liked to plan, know what to expect. But dementia makes life uncertain. Her lists, notes on the calendar and cellphone alarms helped her navigate her days as her thinking declined. But lately, those reminders don’t even make sense, nor do the emails or texts she keeps as background. During one of her last trips driving to the grocery store, she zigzagged among the aisles, pausing to ponder the overwhelming choices of cheese or hot dogs. She passed a display of candy on sale and grabbed her favorite, Sprees, only to realize she already had a box in her cart. She used to zip strategically through a store. Cooking was fun and easy. Now planning and preparing a meal feels like a major undertaking. “It’s like a full-time job, where it used to be an ancillary part of the day,” she said. “It’s frustrating for someone who has always been so methodical and meticulous.”

FEELING LIKE A NOBODY Lonni finds herself reminiscing more about the past. Driving through the winding roads of the Bayshore subdivision in Arnold where she grew up, Lonni shared stories of those who used to live in the small homes — her best friend, the sheriff, her first boyfriend, a firefighter. “He got my dad a job at the firehouse as a dispatcher,” she said. “My dad worked there 30 years.” She pointed out where a malt shop and go-kart track used to be, the orchard where she picked apples in the summer. Twin Pools had a way better concession stand than her neighborhood pool. They played in the Meramec River when they weren’t supposed to and had to make sure they returned with no ticks. “It’s funny,” Lonni said. “Now I talk about my childhood all the time.” Those years are easy to recall. It’s the See LONNI • Page A9


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ST. LOUIS POST-DISPATCH • A9

Association is there to provide support Families should seek assistance in the early stages of Alzheimer’s, advocates say BY MICHELE MUNZ St. Louis Post-Dispatch

The Alzheimer’s Association has dozens of chapters across the country offering free services to help those living with dementia and their caregivers at every stage. However, only about 7 percent to 10 percent of those eligible access the support, said Cheryl Kinney, director of client services for the Greater Missouri Chapter, which serves 86 counties in Missouri and 10 in Illinois. “If a doctor just hands them a brochure with a phone number on it, they won’t call,” Kinney said. Some doctors don’t even mention the Alzheimer’s Association, she added. “It’s, ‘Here’s a prescription and call me in a year.’ And people are struggling.” The association provides personal care consultations to address needs and concerns. Services include a 24-hour help line, education about symptoms,

support groups, connections to community resources and social activities. Families may not think they need support when symptoms are in the early stages, but advocates say it’s a critical time for preparation and planning. Programs are expanding for those in the early stages as advocates learn more about their needs, Kinney said, including a program called “Leaving Your Legacy” that encourages individuals to think about who they are and how they want to affect others. Through questions — What brings me joy? How can I share that with others? How can I help others? How can I make life better for other people? — individuals are encouraged to leave their legacy in various ways, including letters to grandchildren, a cookbook of their recipes, volunteering, participating in research or making photo albums. “It’s a great time to create a life story through videos or journals, and that makes a person feel like they are able to

CONTACT THE ALZHEIMER’S ASSOCIATION For information, referral and support: Call the 24/7 helpline 1-800-272-3900 Email greatermissouri-helpline@alz.org Log onto alz.org or alz.org/greatermissouri

pass on their lessons learned and experiences to others,” Kinney said. In later stages, it helps families maintain connections and helps health care providers who might be meeting a patient for the first time. “They can see her as Mrs. Jones who is an exceptional seamstress who sewed all her kids’ clothes and loved the Cardinals,” she said. “They see her as more human.” Julie Whitley, a social worker for the Alzheimer’s Association, said she helped patients find their purpose no matter how mild or severe the symptoms. “If the patient is a type-A, want-tocontrol-things personality, this is a really hard disease,” Whitley said. “We

A CARE TEAM Lonni, five of her closest friends, Dan and his best friend gathered around a table in March on the back patio of Seamus McDaniel’s, a busy pub in Dogtown where Lonni grew up celebrating family milestones such as birthdays and graduations. The group met for an early dinner at the suggestion of Rebekah Backowski, 43, who worked with Lonni 10 years ago as a review nurse for the then-Mercy Health Plans. “Do you know I don’t know any of your friends?” Backowski had told Lonni. “What if you need something, and I can’t be there? I’d like to have someone I can call.” As they looked over menus and ordered drinks, Backowski passed around a paper for everyone to write down their names, numbers and emails. They tried to figure out who had known Lonni the longest. It was June McCartney, 60, of Fenton, who met Lonni in 1979 while working together in the burn unit at Mercy Hospital St. Louis. Lonni held her hands together to keep them from shaking — a new symptom — and filled them all in on the latest: She has stopped driving. She senses things that aren’t there, such as her old dog or someone staring at her through the window. She’s been falling … a lot. She falls reaching for dishes or turn-

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

INTERACT

LONNI • FROM A8

recent days and years where details are fuzzy. She feels more confused. She compares the feeling to waking up from a nap not knowing what day or time it is. “Sometimes that just happens when I’m in the middle of something. It’s like, I know where I am, but I don’t know what I’m supposed to be doing,” she said. “I feel like I’m supposed to be doing something else.” She’s scared. Her identity has been her intelligence, and she feels it slipping away. “I’m worried about feeling like a nobody,” she said. Dan has learned that meltdowns are inevitable. Three times a day she scrubbed at a white film on the dark wood laminate floors in their apartment, trying different cleaning solutions. But the floors kept getting cloudier. “The landlord is going to make me pay for the floors,” she said, crying. “I’m a failure. I can’t do anything right.” An impatient salesperson leaves her sobbing in the car. A misplaced work folder has her convinced she’ll be fired. A minor disagreement with her sister has her threatening to cancel a trip to visit. Dan said she was always thickskinned, unflappable. Now, he constantly has to calm and reassure her. “She gets into super-panic mode over stuff not necessarily urgent,” he said. “If something is wrong, it’s as-bad-as-itcan-get wrong.” Lonni’s younger sister, Mary Allen, 59, lives in the Las Vegas area. Growing up, she remembers telling Lonni, “You aren’t the boss of me.” But Allen came to depend on her big sister’s advice. She misses being able to lean on her big sister. “It’s kind of like when your parents get older, you become like the parent and they become the child,” she said. “Well, now I’ve become the big sister.”

help them focus on what can you do now and still do well?” Advocates say connecting with others early in the disease process is important in helping people feel more supported as symptoms progress. They call this a “care team” — friends and family who are informed about the person’s needs and educated about dementia. The Alzheimer’s Association can facilitate a discussion among team members. Or if a person has few close family members or friends, the association can help figure out ways — such as using a church or volunteer group — to fill the gaps. It’s important not to become isolated. “Start building that care team early and expand it as needed,” Kinney said. “The emotional, spiritual and financial toll can be so overwhelming. That is why you need a care team in place. You need to know who you can turn to.”

> Visit us online for information on dementia, how many people are affected and symptoms. stltoday.com/dementia > Join our Facebook group, Living with Dementia, to share your stories, ask questions and seek support. > Follow the stories on Instagram @stltoday > Short on time? Listen as reporter Michele Munz reads her story. > Chat with an expert with the Alzheimer’s Association Greater Missouri Chapter on how to cope with dementia symptoms, and what services are available for families. Join us at noon Thursday at stltoday.com/chat. Click on “news.” PHOTOS BY CHRISTIAN GOODEN • cgooden@post-dispatch.com

Physical therapist Derek Gould prepares Lonni Schicker for an exercise during her first physical therapy appointment on April 25. Lonni has been falling frequently, and the physical therapy is to help improve her motor skills.

ing away from the washing machine. She runs into door jams. She trips over something she thinks she sees on the floor, such as a cord. She went to a doctor for pain in her side, and it turned out to be a fractured rib. She’s not sure how she did it. “The whole time Dan is at work, he’s worried about me falling and seeing things,” Lonni told them. “So, we’ve been talking about what I’m going to do all by myself at home every day. I don’t get any socialization during the day. All my friends work.” The next day, she revealed, she was going to check out Dolan Memory Care Homes, a household model designed to assist about a dozen residents through the end of life. She wasn’t sure whether she could afford it. Surprised, they asked how soon she could be moving. “Probably sooner than later,” Lonni said. She doesn’t want to face a long wait list when her situation is more dire, she said. “It’s so hard to get in.” To help keep her safe in the meantime, Tom prescribed Lonni a medication typically given to Parkinson’s patients to help with her motor control. He also prescribed physical therapy and assessment for a cane or walker, as well as vigorous exercise and healthy food. The hardest is not being able to drive. Lonni feels cooped up. She lives at the end of a hilly cul de sac leading to a winding two-lane road with no sidewalks, so she can’t even go on a walk. She and Dan say their friends are critical in helping them cope. When Lonni’s sister moved to Las Vegas last summer, Lonni turned to Susan Miller, who was one of her sister’s friends, and asked, “Who is going to take care of me?” “I will,” Miller said. Miller, 63 and retired, has become one of Lonni’s best friends. She often drives from Belleville to take Lonni to appointments, have lunch or go thrift shopping. Sometimes, Lonni tells her she doesn’t need to come. But Miller ignores that. There are times, however, when Lonni can’t help but feel alone. One morning, she really wanted a soda. But she couldn’t just hop in the car. And it would be silly to ask Miller to drive all the way to Fenton just to bring

Lonni Schicker (left) has lunch with her friend Susan Miller at Joe Clark’s Restaurant in Fenton in February. Since returning to St. Louis after her initial diagnosis of mild cognitive impairment, Lonni has just a handful of friends she relies on for companionship and favors.

her a soda. Lonni suddenly found herself crying. “The soda wasn’t the problem,” she said. “It was the realization that I’m not independent anymore.” Michele Munz • 314-340-8263 @michelemunz on Twitter mmunz@post-dispatch.com

VIDEO > Watch Lonni Schicker talk about coping with the effects of a disease that is eroding her mind. > Dr. Mohamed Babiker Tom Bakhit, a neurologist at Mercy Hospital, explains why dementia is difficult to diagnose. Go to stltoday.com/dementia > Answering questions: causes; early signs; and dementia by the numbers stltoday.com/dementia


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

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ON CAMERA, IN THE DARK Uber, Lyft driver livestreams video of unwitting passengers, as his followers chime in online

> Ride-hailing companies note one-party consent recording is legal in Missouri > Man defends practice, saying car is a public space and he ‘loves doing it’ BY ERIN HEFFERNAN St. Louis Post-Dispatch

ST. LOUIS • On a recent SaturSCREEN CAPTURE VIA TWITCH

Jason Gargac, of Florissant, livestreams videos of his rides as an Uber and Lyft driver without his customers’ knowledge. He lights the interior of his pickup purple to better show his passengers. In this image from Gargac’s channel on the website Twitch, the Post-Dispatch has added black boxes to obscure the faces of the passengers.

day night, two women in their early 20s called an Uber from Ballpark Village in downtown St. Louis. Within minutes “Jason” arrived driving a black Chevrolet

Silverado. They climbed into the pickup’s back seat, illuminated by purple lights. The driver, a bearded man in his 30s, was friendly. The women asked where he went to high school. They joked about friends they were going to meet at a bar across town. But there was something the

women didn’t know: Their driver was streaming a live video of them to the internet, and comments from viewers were pouring in. The blonde is a 7, the brunette a 5, someone with the username “DrunkenEric” commented. See DRIVER • Page A8

In Branson, a mix of mourning, moving on

STOLEN FUTURE

FIGHTING BACK BY SPEAKING OUT

Victims’ friend ‘didn’t even sleep’; investigation, tourism both continue

Former professor finds purpose sharing story of early-onset dementia to dispel stigma, raise funds and push for legislation

BY KURT ERICKSON St. Louis Post-Dispatch

BRANSON, MO. • Up early on a sundrenched parking lot in this southern Missouri resort town, Russell McKay was paying his respects Saturday morning to his good friends. Mixing happy memories with tears, McKay stood next to the SUV owned by Bill Asher, one of 17 victims of Thursday’s deadly amphibious vehicle accident on nearby Table Rock Lake. “I didn’t even sleep,” said McKay, who drove from his home in south St. Louis County soon after hearing about the mishap. “What a gracious, articulate, wonderful man he was.” Asher and his girlfriend, Rose Hamann, were among 31 people on the World War II-era duck boat when it went down amid whitecap waves as a strong thunderstorm See LAKE • Page A4

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Cardinals, Cubs split Saturday doubleheader

In a soft glow of purple, the color for Alzheimer’s awareness, Lonni Schicker is recognized at the annual Alzheimer’s Association fundraiser gala in April. Those attending had just seen a video in which Lonni described her experience with dementia. BY MICHELE MUNZ St. Louis Post-Dispatch

EDITOR’S NOTE: This is the third part in an occasional series about dementia. LONNI’S STORY: Catch up on the series at stltoday.com/ dementia

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veryone at the annual black-tie gala for the Alzheimer’s Association Greater Missouri Chapter seemed to know her. They stopped to take pictures with her, told her she looked beautiful. § She and her son, Dan, wearing a bow tie and cummerbund with hints of the Alzheimer’s awareness color purple, made their way to a large circular bar. Waiters handed out champagne

glasses of sparkling drinks with crystal-like sticks of rock candy. § Tom Carmody, 65, with Edward Jones, a major sponsor for the Alzheimer’s Association, approached her: “I heard you on the radio today. You were so good.” § He was particularly touched, he said,

Message is medium in protest banner class

by how she described going from being a busy college professor to nothing. § “You,” Carmody said, “are kind of like the poster girl for what the issues are.”

A&E

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Ride-oversharing

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Old Toys R Us storefronts add to glut of big boxes

Police forgot Fourth Amendment

BUSINESS

Travel to Missouri’s Ozark wonders

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Changes pay off for pitching prospect

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Teachers spark early interest in STEM

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A6 • ST. LOUIS POST-DISPATCH

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The uncertainty is the ‘worst part’

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker waits in her Fenton living room while a video crew sets up equipment in January to record a piece to be played at an Alzheimer’s Association fundraiser scheduled for April. Since being diagnosed with mild cognitive impairment, Lonni has committed herself to being an advocate for the organization and sharing her experience with dementia.

STIGMA CREATES OBSTACLES The stigma around dementia can prevent people from: • Seeking medical treatment when symptoms begin. • Receiving an early diagnosis or any diagnosis at all. • Living the best quality of life possible while they are able. • Making plans for their future. • Benefiting from available treatments for symptoms. • Developing a support system. • Participating in research.

EXAMPLES OF STIGMA • Friends refuse to believe your diagnosis or withdraw from your life, leaving you with a feeling of abandonment or isolation. • Family members do not want to talk about the disease, perceive you as having little or no quality of life, or avoid interacting with you. • Others ask your care partner about you rather than ask you directly how you are doing. • The reaction of some friends and family to your diagnosis prevents you from seeking help.

FIVE TIPS TO OVERCOME STIGMA 1. Be open and direct. Share your diagnosis. Engage others in discussions about Alzheimer’s disease and dementia and the need for prevention, better treatment and a cure. 2. Learn and communicate the facts. Sharing accurate information is key to dispelling misconceptions about the disease. It can be a pamphlet or a link to online content. Participate in an Alzheimer’s Association education program. 3. Seek support and stay connected. Stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical. Engage with others like you in Alzheimer’s Association message boards or support groups. 4. Don’t be discouraged. If people think Alzheimer’s disease or dementia is part of normal aging, see it as an educational opportunity. Talk openly about your experiences, communicate when you need help and learn what the emotional needs of your family and friends are. 5. Be a part of the solution. As an individual living with the disease, yours is the most powerful voice to help raise awareness, end stigma and advocate for more support and research. You can volunteer, help with fundraisers or participate in research. SOURCE: Alzheimer’s Association

LONNI • FROM A1

Lonni was a special guest that night. After the dinner, she shared her story of her struggle with dementia in a video that played on the mega screens before the start of the high-dollar auction. That morning, she also appeared on KMOX with radio host and emcee for the gala Carol Daniel. From St. Louis to Jefferson City to Washington, Lonni opens her life to lawmakers, doctors, researchers and others like her who are suffering. She has spoken at dozens of fundraisers, meetings, training sessions, rallies and symposiums. “I feel like I have a limited amount of time to talk about what I need to talk about,” said Lonni, 63, of Fenton. “I can’t teach, but I can teach about this.” Four years ago, Lonni was diagnosed with mild cognitive impairment, ending her teaching career. Her symptoms have progressed to dementia. Alzheimer’s disease is the most common form of dementia. Doctors are monitoring Lonni for a type of dementia known as Lewy body dementia because of the hallucinations, falls and sleep issues that accompany her memory problems. As with Alzheimer’s, there is no cure. Lonni had her days, weeks and entire life planned. Now, she has no idea what the future holds. “The uncertainty is the absolute worst part. It’s such an unstable disease. There’s no way to predict one day from another to how you will feel and what will be different,” she said. “There’s a certain hopelessness in knowing there’s no cure.” She does the only thing she knows how to do with certainty: help others. “I applied myself to talking about it and living life to the fullest and staying busy. It gives a certain amount of hope back,” she said. “At least I know I can help somebody else cope.” Lonni had looked forward to the gala for weeks. A broken rib from a fall and a painful shingles rash on her side triggered by stress was not going to stop her. She fixed her newly dyed blond hair and put on the highest heels she could manage. Daniel introduced Lonni to the people crowding the ballroom and announced the start of her video. “I’m so impressed by her will to fight, her style and her commitment to the cause,” Daniel said. “If I could please turn your attention to this wonderful woman.”

‘SOMEONE LIKE YOU’ A couple of years after she was diagnosed with mild cognitive impairment, Lonni picked up the phone and called the national Alzheimer’s Association office. Her local chapter was helpful in providing support and education. But she felt like she wanted to do more. “I wanted to get involved some way,” Lonni said. “I just wasn’t sure how.” The person on the phone was obviously impressed. “We have this group. Are you interested?” Lonni recalled her asking. “Because we could use someone like you.” Lonni was interviewed and chosen along with 10 others across the country to serve for a year on a national

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

Lonni Schicker, 63, listens in on a conference call last month about the National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers at the Fenton home she shares with her son.

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

Lonni Schicker and son Dan wait on the field at Busch Stadium in April to help the Alzheimer’s Association and Edward Jones set a Guinness World Record for the largest human image of a brain. The record was set with 1,202 participants.

early-stage advisory group for the association. The group worked to raise awareness about the early stages of dementia and advocated for more research and support programs. “The most positive thing was connecting with people who were in the same boat and discovering the strongest sense of purpose than I ever had before,” Lonni said. The year culminated in October with her invitation to speak at a national summit in Washington, for researchers and providers of dementia care, organized by the National Institutes of Health. Hearing from patients about their needs was new to the annual summit, which is heavy on the latest science and breakthroughs. “I couldn’t depend on beauty or wit or street smarts, but I had my brain,” Lonni said in her speech. “My brain has always been the star of my show.” She described being unable to work and the devastating medical bills, the fear she has of getting lost and of no one being able to find her. She explained how people need community programs that involve them at every stage of the disease. “I am asking each and every one of you to remember that at the base of all

of this, we’re just human beings trying our best to live with dementia with the knowledge that it’s an incurable disease,” she said, “and we are counting on each of you to find the answers.” The nation’s top experts, who filled the auditorium, rose to their feet in lengthy applause.

EMPOWERING, COMFORTING Cheryl Kinney, senior director of client services for the local Alzheimer’s Association chapter, said it’s critical for people such as Lonni to describe what it’s like to live with dementia. Usually, people picture someone in a nursing home who needs lots of care, Kinney said. “She’s helping provide a whole different face to the disease.” Lonni’s stories of how she adapts and continues to find meaning in her life show others that their lives don’t have to be all about dementia. “When you have people like Lonni saying this is the way I’ve chosen to live my life with the disease, that can be very empowering and very comforting to individuals and families,” Kinney said. Julie Whitley is a social worker with the Alzheimer’s Association who meets See LONNI • Page A7


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ST. LOUIS POST-DISPATCH • A7

LONNI • FROM A6

with families after a diagnosis. She is among a handful housed in medical offices as part of a new program to immediately connect families to the association’s support services. Whitley, who works at Washington University’s Medical Diagnostic Center, sees how the stigma surrounding dementia prevents patients and their caregivers from getting help. “I have multiple conversations with patients and caregivers who say, ‘I don’t want anyone to know. I don’t want anyone to look at me differently,’” she said. Kinney said in her 22 years of helping families, she mostly has seen people in the moderate to late stages of the disease. But that is changing because of trailblazers like Lonni. “With more awareness, better diagnosis and less stigma,” Kinney said, “we’re beginning to see people with early stage dementia and hearing about their wants and needs.” Their input has led to new support programs including telephone calls by peers, social outings, volunteer opportunities and ways to document and find meaning in their lives. “If a person can’t work in the capacity they used to, maybe the person can volunteer at a food pantry or care for animals or read to children,” Kinney said, “so they are not sitting idle or isolated in their home, letting the disease consume them.”

PHOTOS BY CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker (center) goes over the logistics of a March trip to lobby at the Missouri Capitol with Eva Tucker (from left), Peggy Killian and Carroll Rodriguez, both with the Greater Missouri Chapter of the Alzheimer’s Association.

DIRTY LITTLE SECRET In March, Lonni traveled to the Missouri Capitol to ask legislators to fund programs that would help families care for loved ones with dementia. She was among about 175 people who took charter buses to Jefferson City from across the state. On the bus, a video played on television screens hanging from the ceiling: “If you know three facts about Alzheimer’s, you probably know more than a legislator.” In Missouri, 110,000 people have Alzheimer’s disease — the most common form of dementia. About 70 percent live at home. More than 300,000 people are caregivers, providing more than $4 billion in unpaid care. “Briefly share your personal story and connect your story to the ask,” the video instructed. This year, advocates were asking for two things, aimed at delaying the need for expensive nursing home care: • Maintain $450,000 in respite assistance to help families cover the cost of caring for a loved one at home, including expenses such as incontinence supplies or adult day care services. • Pass the Structured Family Caregiver Act to provide a daily stipend for caregivers living with and providing care for a loved one who qualifies for Medicaid. Inside the busy Capitol, they divided into teams to catch legislators in their offices and in the hallways. Lonni told legislators about moving in with her son, Dan, and how he worries about her being alone while he’s at work. He often needs time off to care for her or take her to appointments. Afterward, the advocates gathered in the rotunda for speeches. Each was given a flower: yellow for caregivers, orange for supporters, purple for those who have lost a loved one to dementia, and blue for those with dementia. Lonni was among only a handful proudly holding a blue flower. Most carried purple. Speaker Linda Parks, whose husband of 50 years has Alzheimer’s, told the crowd that she hopes one day there will be white flowers for those who survive the disease. “There is only one ending to our story,” Parks said, “and that is what we have to change.” On the bus, a man sitting behind Lonni thanked her for coming, for being courageous. As an educator, she hardly had to think twice, Lonni told him. But she’s learning others want to stay in the shadows. “I was shocked when I started finding out how many people have cognitive impairment or dementia, but it’s like a dirty little secret no one wants to talk about,” she said. “I thought, I’ve been doing this all my life. This would be an important thing to speak up about.”

‘A SENSE OF URGENCY’ At the gala, a sea of silver sequined tablecloths topped with vases of dimly lit purple rocks and disco balls cast a soft glow. The video about Lonni illuminated the ballroom. She described how she went from making six figures to living paycheck to paycheck. How she hates that her son, 32, is spending what should be the best years of his life caring for his mother. “I feel a sense of urgency to do as much as I possibly can,” Lonni said in the video. “I want other people to feel that urgency.” After the video ended, the crowd of about 600 people rose to their feet in applause around Lonni’s table. It was another memorable standing ovation. The chapter raised nearly $800,000 that night for services and research, living up to its selection in January as the Crystal Award winner, the highest chapter honor awarded each year by the Alzheimer’s Association for advancing public policy, awareness, care and research. “She is an integral part now of the Alzheimer’s Association because she wants to be. She wants to have an impact,” said Daniel, the emcee, whose own mother was diagnosed with dementia three years ago. “We all have stories, and they should fuel this fight.” In the audience that night were a woman who worked with Lonni when

Just off a bus from St. Louis, Lonni Schicker (right) arrives at the Missouri Capitol in March, with Jim Espie (from left), Eva Tucker and her son, Mark Tucker, 8. Hundreds of Alzheimer’s advocates held a rally in the rotunda to draw attention to their cause.

Lonni Schicker peeks at the floor of the House of Representatives In Jefferson City in March. Alzheimer’s Association advocates divided into teams to catch legislators in their offices and in the hallways.

INTERACT

ABOUT THIS SERIES

> Visit us online for information on dementia, how many people are affected and symptoms. stltoday. com/dementia > Join our Facebook group, Living with Dementia, to share your stories, ask questions and seek support. > Follow the stories on Instagram @stltoday > Short on time? Listen as reporter Michele Munz reads her story. > Chat with Lonni Schicker about her experiences with dementia and her work as an advocate for patients and caregivers. Join us at noon on Thursday at stltoday.com/chat. Click on “news.”

About four years ago, Lonni Schicker’s doctor told her that at age 59 she had mild cognitive impairment. The diagnosis placed her at a higher risk of dementia. She is sharing her story in the hope of helping others.

VIDEO > Watch Lonni Schicker talk about the urgency she feels to make a difference. > Lonni speaks at a National Institutes of Health event on Alzheimer’s disease. stltoday.com/dementia they were young nurses in the burn unit at what is now Mercy Hospital St. Louis and a former student Lonni taught while earning her doctorate from Lindenwood University. They embraced her in tears and hugs, both shocked and sad to see one of the smartest and most caring people they know describing how her brain doesn’t work anymore. The nurse, Janie Gammon, 61, of O’Fallon, Mo., wasn’t surprised to learn Lonni had gone on to be a professor, nor that she was speaking out in the midst of her disease. “That’s just her personality and her purpose,” she said. Lonni said seeing the women reminded her of “such good years,” but also why she is so passionate about teaching. They and many others told her she was phenomenal. She was inspiring. “I feel like I’m at the prom or something,” Lonni said, laughing. Lonni stays in touch with some of her former students from Minnesota State University. One said she was thankful to learn her mentor is continuing to make a difference. Samantha McDonald, 29, of Fargo, S.D., had watched Lonni’s life turn upside down when her symptoms started. Lonni felt she could no longer be a professor and abruptly moved home to St. Louis. The gala was like the retirement party she never got. “I’m glad she is being remembered in this way,” McDonald said. “These should be her last marks, not the end of her employment. Her employment was not the end of her career. Her career was not just her job. It was always her life.” Michele Munz • 314-340-8263 @michelemunz on Twitter mmunz@post-dispatch.com

UP NEXT IN PART 4 • Tight budgets and drained savings LONNI’S STORY • Catch up on the series at stltoday.com/dementia


CENTER STAGE Blues have upgraded a vital position CHRISTIAN GOODEN POST-DISPATCH

NHL PREVIEW • SPECIAL SECTION SUNDAY • 09.30.2018 • $4.00 • FINAL EDITION

Snags unlikely to tangle West Lake cleanup EPA gets a lot of legal leeway when polluters balk

STOLEN FUTURE

THE HIGH PRICE OF DEMENTIA Since Medicare doesn’t cover home help or adult day care, families struggle to pay the bills — and deal with the strain

BY BRYCE GRAY St. Louis Post-Dispatch

Some of the debate and division that has long surrounded the high profile West Lake Landfill Superfund site in Bridgeton was not immediately dispelled by the Environmental Protection Agency’s selection of a cleanup strategy last week. While the chosen $205 million remedy — which calls for excavating about 70 percent of the landfill’s Manhattan Project-era radioactivity and disposing of it out of state — was cheered by groups concerned about the site, some of the entities that will ultimately need to pay for the cleanup slammed the decision and called it “arbitrary and capricious.” EPA officials and environmental law experts, though, say that the agency’s record of decision signed Thursday is See WEST LAKE • Page A5

FBI begins contacting Kavanaugh’s accusers

PHOTOS BY CHRISTIAN GOODEN • cgooden@post-dispatch.com

“I used to be able to play twice this many boards, but now it takes too much concentration,” says Lonni Schicker as she listens for bingo calls in January at the Arnold Eagles Club. Lonni played for fun and to give her son, Dan, a chance to hang out alone with his friends. She also hoped for a win to help pay off her medical bills, but the cost to play instead became a source of stress. Now she rarely gets to the bingo hall.

BY MICHELE MUNZ • St. Louis Post-Dispatch

L

WASHINGTON POST

WASHINGTON • The FBI

has begun contacting people as part of an additional background investigation of Judge Brett Kavanaugh, including a second woman who alleges that the Supreme Court nominee sexually assaulted her, according to people familiar with the unfolding investigation. The bureau has contacted Deborah Ramirez, a Yale University classmate of Kavanaugh’s who alleges that he shoved his genitals in her face at a party where she had been drinking and become disoriented, her attorney said Saturday. “ S h e h a s a g re e d to

See KAVANAUGH • Page A4

IT’S ALL OVER SPORTS D1

onni Schicker, 63, sets up her laptop on a small table in the corner of the kitchen of the apartment. The computer is on loan from the Alzheimer’s Association. She opens a spreadsheet. § A stack of bills sits

between her and her son, Dan Schicker, 32. § “So, what I need, Dan, is the name of the provider, the date of service and the amount due,” Lonni tells him. “And the billing

Lonni Schicker works in February at her part-time job for Guide Book Publishing in Ballwin. Lonni has had to quit driving and now always works from home. She had just gotten her dream job as a professor when her memory problems started.

EDITOR’S NOTE: This is the fourth part in an occasional series about dementia.

Lawyer found guilty in fatal Frontenac crash • A5 Tsunami kills more than 420 in Indonesia • A11 Musk settles with SEC, won’t be board chair • C1

LONNI’S STORY: Catch up on the series at stltoday.com/dementia

FLORISSANT’S ‘VOICE’ SINGER HAS SHOT AT TITLE STL LIFE

Cemetery tours use actors to tell stories • B1

phone number.” § The plan is for him to call each one, ask for discounts and negotiate a payment plan. § When medical bills come in the mail, Dan can’t bear to open them. He just adds them to the stack. See DEMENTIA • Page A8

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A8 • ST. LOUIS POST-DISPATCH

STOLEN FUTURE

M 1 • SUNDAY • 09.30.2018

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker tries out a scooter in August with service technician Chris Puleo (left), as she shops with her son, Dan, at Provider Plus Inc. Lonni has been diagnosed with Lewy Body dementia, a progressive form of the disease. Using a scooter could help her avoid falls, which have recently led to injuries.

STRESS MOUNTS WITH BILLS DEMENTIA • FROM A1

The bills are for his mom, whom he’s been caring for in their Fenton apartment since memory problems ended her career as a college professor almost five years ago at the age of 59. Her problems have since progressed to dementia. He pulled the stack from a drawer in the garage, where he doesn’t have to look at the bills. “We struggle enough to pay regular bills,” Dan says. “These, on top of it, is overwhelming.” Lonni knows the thought of going through the stack paralyzes him. After weeks of excuses, she’s finally convinced him to sit down after work one night and go through it together. Dan rips one open and reads the amount: “BJC Emergency, $270.66.” With each envelope, he gets angrier. “It’s just knowing the number of them,” Dan said, “and the thought of how poorly you were treated by the government because of your disease.” When Lonni stopped working, she was approved for Social Security disability, which took six months to begin. She had to wait two years for her disability to be considered permanent and covered under Medicare. In the interim, she was on Medicaid, which meant going to clinics where she saw a different doctor every time. Each month, she had to pay the first $1,500 out of pocket before any care was covered, she said. It drained her savings. They fell months behind in rent, utilities, car and student loan payments. “Her health care was more important than any bill,” Dan said. Her health also suffered. Her diabetes and blood pressure were poorly managed, sending her to the emergency room. She battled depression and anxiety. Her memory problems got worse. “Clinics are Band-Aids,” Lonni said. “They treat the immediate need, but there’s no long-term or follow-up care. There’s no treating of the underlying problem.” A year ago, Lonni’s Medicare coverage began. She finally had surgery for a painful torn rotator cuff. She began regular visits with an internist to stabilize her blood sugar, a psychiatrist to treat her anxiety and a neurosurgeon to manage her dementia. Dan says, “Part of it is a spite issue. I don’t want to pay it. (Expletive), you didn’t take care of my mom.”

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker chats with D’juana “Dee” Franklin this month before getting a bath at Mercy Hospital St. Louis. Lonni had fractured a rib and a bone in her lower back from falls at home. The last fall required extensive back surgery.

ABOUT THIS SERIES About four years ago, Lonni Schicker’s doctor told her that at age 59 she had mild cognitive impairment. The diagnosis placed her at a higher risk of dementia. She is sharing her story in the hope of helping others. UP NEXT IN PART 5 When I can’t take care of her

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

Lonni Schicker, 63, of Fenton, shops at Savers thrift store in Crestwood in July.

CHECK TO CHECK The financial toll of Alzheimer’s and related dementias on families is staggering. Figures show that dementia caregivers, often a spouse or child, spend an average of $10,700 a year — nearly twice that of caregivers for those with other conditions. A 2015 study of Medicare patients found that the out-of-pocket cost for a dementia patient in the last five years of life was $61,522, more than 80 percent higher than the cost for someone suffering from other leading killers like heart disease or cancer. Many of the costs associated with dementia care do not involve surgeries or treatments. They include deductibles and copayments and what can be many years of help in the home with eating, grooming and bathing — which are not covered by Medicare. People in moderate stages of dementia benefit immensely from socialization and meaningful activities, but Medicare doesn’t cover adult day care programs. Preparing healthy meals, forgetting to eat and incontinence are problems, but Medicare doesn’t cover nutritional supplements or adult diapers.

LONNI’S STORY Catch up on the series at stltoday.com/dementia

Cheryl Kinney, director of client services with the Alzheimer’s Association Greater Missouri Chapter, said families are struggling. “Unless an individual purchased long-term care insurance before the dementia diagnosis, medical insurance doesn’t cover expenses such as in-home support to provide supervision, oversight and companionship,” Kinney said. “Many individuals with Alzheimer’s don’t have a need for nursing visits, but they do need someone to assure they are safe at home.” Harder to measure are the ripple effects. When younger adults are diagnosed with dementia while they are still working, they often have to quit their jobs. Families with children at home end up scrapping college saving plans. Adult children may have to quit their jobs to become caregivers, which makes it harder for them to re-enter the workforce later and decimates their savings. “Some have to turn to public assistance such as food stamps to make ends meet. Some cash in their investments and tap into their retirement benefits in order to cover daily living expenses,”

Kinney said. “Some consider or actually go through a divorce from their spouse with dementia to try to preserve assets out of fear of financial destitution.” The strain leads to anxiety, shame, depression and social isolation. For patients, this can also exacerbate symptoms of dementia. When Lonni first started experiencing problems as a professor five years ago, she was diagnosed with mild cognitive impairment. About 16 percent of people age 60 and over in the U.S. — 11.6 million people — have the impairment. Studies estimate almost 40 percent will develop dementia, when symptoms become severe enough to interfere with daily function. Lonni was diagnosed with dementia earlier this year, and her neurosurgeon is monitoring her for a progressive form known as Lewy Body dementia. Like Alzheimer’s, there is no cure. “I have nothing left,” Lonni said. “I have no assets, no savings, no retirement funds left. I’m living from disability check to disability check.”

INTERACT

See DEMENTIA • Page A9

> Listen to a podcast with Schuster.

> Find information on dementia, how many people are affected and symptoms. stltoday.com/ dementia > Short on time? Listen as reporter Michele Munz reads her story. > Join our Facebook group, Living with Dementia, to share stories, ask questions and seek support. > Chat with Debra Schuster, a Clayton lawyer who specializes in elder law, about issues such as power of attorney, financial exploitation, protecting assets and other financial issues. Join us at noon on Tuesday at stltoday.com/ chat. Click on “news.”


STOLEN FUTURE

09.30.2018 • SUNDAY • M 1

ST. LOUIS POST-DISPATCH • A9

DEMENTIA • FROM A8

KEEPING IT PRIVATE Their small two-bedroom apartment came with a perk — a one-car garage. Dan used it as his “man cave,” outfitting it with secondhand furniture, a wallsize television screen and a projector. After work and caring for his mom, Dan spent nights there with friends, eating spaghetti Lonni made, playing Dungeons and Dragons and watching football games. One night, he sold it all. That month, Dan was late on paying rent and other bills, but he shrugged it off as having nothing to do with that. “I didn’t need it,” he said. Stress and anxiety make his mom’s symptoms worse. He has taken over the finances, so he tries to shield her from problems as much as possible. “I’d rather me be stressed than her,” Dan said. “I’ve sold my game systems more times than I can count. I’ll sell some furniture. I’ll just do what I can to make it.” But that is getting harder. He used all his vacation days to either take his mom to doctor’s appointments or to be with her when she was having a hard day. “So days I have to take off when she is sick, I don’t get paid for it,” he said. Dan says it’s critical for his mom to get out, socialize and stay active. She works at home part time, entering information for a church directory into spreadsheets. When she wants to play bingo or have lunch with friends, he doesn’t want to tell her no. He thinks about what they can sacrifice — groceries? Paying a bill late? — so she’s not cooped up. “I don’t want to dictate how she spends the rest of her life. I want her to be happy,” he said. “She hates being at home. She’s always been the type of person that has to be doing something.” While Lonni copes by speaking out about her struggles as a volunteer and advocate with the Alzheimer’s Association, Dan is more private. “The idea that this is in an article makes me so uncomfortable,” he said. “I don’t want people to know. My friends don’t even know how serious this is.” He hides his worry with his wicked sense of humor. He tries to put the bills out of sight and out of mind. “I don’t like asking for money; it’s hard for me to ask for help,” he said. “I usually just ignore it.” But Lonni can sense the stress. She knows Dan is constantly worried about money. She hates that he has to take care of her and make sacrifices with his own money and social life. While staying busy keeps her happy, it has become harder to get out with a tight budget. In the spring, she stopped driving because it became too dangerous. In early May, for the second time in the past four years, Lonni’s depression got so bad she had to stay in the hospital for a few days. She had been losing her balance and having painful falls. A new medication was not reacting well with another. “I just felt like I was done with everything. It’s OK if I just die. I don’t really care,” Lonni recalled thinking. “I’m just done with all this.” When she went to see her psychiatrist, a $40 copay sent her over the edge. She had no money with her. She called Dan, sobbing. “Don’t waste your money on me,” he recalled her saying. “I’m worthless.” Dan talked her into staying. The psychiatrist was so concerned, she told Lonni’s friend who had driven her there to take her straight to the hospital. “I was in a state where I didn’t want to spend the money,” Lonni said. “I thought, it’s not going to help anyway. I thought things were never going to get better.”

WHO CAN AFFORD THIS? Lonni always worked long days, doing whatever she had to do as a single mom to take care of her son. While working as a nurse’s aide, she earned her nursing degree. While working as a nurse and in health care administration, she earned her bachelor’s, master’s and doctorate degrees. She had just gotten her dream job as a professor when her memory problems started. “I didn’t save much,” Lonni said. “I thought I would die at my desk.” When Lonni applied for disability, she had no idea what little would be covered. “They don’t tell you that you will be on Medicaid for two years with a $1,500 spend-down you have to pay out-ofpocket,” Lonni said. “No one tells you anything to prepare you.” Debra Schuster, a lawyer in Clayton who specializes in elder law, helps families navigate the confusing world of insurance coverage, estates and trusts to protect assets — all while helping them deal with issues such as power of attorney, financial exploitation and end-oflife care. She connects families to programs that help cover the costs of needs such as adult day care and transportation. “Most of the time, people are not as proactive as they could be because they don’t know this area of law exists,” Schuster said. Many are unaware Medicare — the federal health insurance program for those over age 65 — does not cover assisted living or long-term skilled nursing home care, she said. It only covers skilled care for a few months after a hospital stay. Medicaid, the federal program for the poor and disabled, covers nursing home care after income and savings are exhausted. It pays a small portion of assisted living only in limited circumstances.

CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker (center) listens as Janis McGillick (left) goes over assisted living housing costs in March at Dolan Memory Care Home in west St. Louis County. Figures from this year’s Alzheimer’s Association report show the median cost for care in an assisted living facility is $3,750 a month. “It was eye-opening. It was really eye-opening,” Lonni said.

HOW TO FIND HELP WITH CARE

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

Dan Schicker (center), 32, plays Dungeons and Dragons in February with friends Tim Cox (left) and Brandon Bardenheier in the garage of the apartment in Fenton he shares with his mother, Lonni. He had outfitted the garage as his “man cave,” with secondhand furniture, a wall-size television screen and a projector. One night, he sold it all. “I didn’t need it,” he said. The money went to his mother’s medical bills.

DEMENTIA CARE COSTS

DEMENTIA COSTS OF CARE FOR FOR THOSE 65 AND UP THOSE 65 OR OLDER Amount paid (in billions) Medicare Out of pocket Medicaid Other

$140 $60 $47 $30

SOURCE: Alzheimer’s Association 2018 Facts and Figures report

AVERAGE COSTS OF LONG-TERM CARE Nonmedical home health aide: $22 an hour and $135 a day Adult day care services: $70 a day Assisted living facilities: $3,750 a month, or $45,000 a year Nursing homes: A private room is $267 a day, or $97,455 a year. A semi-private room in a nursing home is $235 a day, or $85,775 a year Most families pay for residential care costs out of their own pockets. Medicare covers short-term skilled care only after a hospital stay. Medicaid pays for nursing home and other long-term care services for some people with very low income and low assets. SOURCE: Alzheimer’s Association

“Studies show people do better in their home, particularly people with dementia, but there’s a real disincentive from a policy standpoint for people to stay in their homes. There’s not enough financial support,” Schuster said. “Medicaid provides more financial support for people to go into nursing homes.” Long-term health insurance is just as important as homeowners or auto insurance, she said. “Really, the biggest issue for people is to invest in some form of long-term care insurance before they become ill.” Long-term care insurance typically covers the cost of care in a nursing home, assisted living facility and dementia facility, as well as services such as adult day care and support in the home. Long-term care policies are more affordable when you buy them in your 50s, but prices are rising and benefits are becoming more limited. A financial adviser or elder law attorney can help determine what policy is best considering savings, health, family history, availability of family caregivers and personal wishes. John Beuerlein, the Edward Jones principal who leads the investment firm’s Older Adult Council, says life insurance policies with chronic health

care riders are becoming more popular than expensive long-term health care plans. “I tell people to consider their employer coverage options for disability coverage or long-term care coverage,” Beuerlein said. “There are private policies, but they are very expensive. Many are rolling the dice and saying, ‘I’ll take my chances.’” In March, Lonni toured an assistedliving facility. She was worried about her frequent falls, her strange hallucinations and feeling lonely. She was also concerned about Dan, who worries about her being home alone. The price tag was $7,000 a month. She looked through a book at cheaper options, but they were still costly. Figures from this year’s Alzheimer’s Association report show the median cost for care in an assisted living facility is $3,750 a month. “It was eye-opening. It was really eye-opening,” Lonni said. “I knew it would be expensive, but who can afford this?” She hasn’t pursued any more options since, despite fracturing a rib and a bone in her lower back from falls at home. The last fall required extensive back surgery.

THE DOWNFALL After Dan rips through the last bill, Lonni reads the tally: “So Dan, we owe $7,283.66.” That doesn’t count money they owe for taxes, credit card bills and previous medical bills. Calculating in her head, Lonni says, “Our overall debt is probably about $13,000.” Those with Alzheimer’s or other dementia are more likely than those without dementia to have other chronic conditions such as coronary artery disease, diabetes, kidney disease and congestive heart failure, studies show. When a person is diagnosed with mild cognitive impairment or early stages of dementia, advocates say coordinated care among specialists would better manage medical conditions and preserve brain function for as long as possible. For nearly three years, however, Lonni got piecemeal care that sent her into debt and exacerbated her health problems. “That was the start of the downfall,” her son said. Dan recently found a higher-paying job at an IT and communications services company. In October, he’ll earn some vacation days. He hopes to be able to schedule a surgery for himself he’s had to put off. He hopes to start paying down their debt. He wants to make his mom happy. “Now, I feel like I can save some money, save for when she needs assisted-living some day,” he said. “And maybe a house. I want a house.” Michele Munz • 314-340-8263 @michelemunz on Twitter mmunz@post-dispatch.com

The National Association of Agencies on Aging is a national nonprofit network of 622 local area agencies on aging that administer federal aging program funds, state funds and community donations for a wide array of services, including senior centers, meal programs, adult day care, transportation, legal services, ombudsman services and in-home and respite care services. To learn more about services in St. Louis, St. Charles, Jefferson and Franklin counties, visit the Mid-East Area Agency on Aging at agingmissouri.org. In the city of St. Louis, visit the St. Louis Area Agency on Aging at slaaa.org. A complete list of agencies across Missouri can be found at the Missouri Association of Area Agencies on Aging at ma4web.org. For the Illinois Area Agencies on Aging, visit illinois.gov/aging. If you suspect a senior or disabled adult is being abused, bullied, neglected or financially exploited in Missouri, call the abuse hotline 1-800-392-0210, available daily from 7 a.m. to midnight. In Illinois, the hotline can be reached 24 hours a day at 1-866-800-1409.

10 TIPS TO PREPARE FOR THE COST OF CARE 1. Talk about finances and future care wishes soon after a diagnosis. 2. Organize and review important documents. 3. Get help from well-qualified financial and legal advisers. 4. Estimate possible costs for the entire disease process. 5. Look at all of your insurance options. 6. Consider work-related salary/ benefits and personal property as potential income. 7. Find out which government programs you are eligible for. 8. Learn about income tax breaks you may qualify for. 9. Explore financial assistance you can personally provide. 10. Take advantage of low-cost and free community services. SOURCE: Alzheimer’s Association

HOW TO FIND A FINANCIAL ADVISER OR ELDER LAW ATTORNEY • Visit the Eldercare Locator online or call 1-800-677-1116. • Use the online directory of the Financial Planning Association or call 1-800-322-4237. • Use the online directory of the National Academy of Elder Law Attorneys. When selecting a financial adviser, check qualifications such as: • Professional credentials • Work experience • Educational background • Membership in professional associations • Areas of specialty SOURCE: Alzheimer’s Association


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 • 11.25.2018 • $4.00 • FINAL EDITION

STOLEN FUTURE

CHANGING ROLES FORGES NEW BOND Lonni Schicker had always been a rock in her son Dan’s life. Now, as his mom’s dementia creeps in, it’s Dan who carries the load.

SMALL BUSINESS SATURDAY ON CHEROKEE STREET

‘Days like this are awesome’ Local stores bank on shoppers’ desire for an experience BY DAVID HUNN St. Louis Post-Dispatch

ST. LOUIS • Cherokee Street sidewalks bustled on Saturday, as visitors from across the region descended on this hip, urban shopping strip. They flitted into handcrafted clothing stores, bought St. Louis-made jewelry and grabbed $3 cupcakes from companies so new they don’t yet have storefronts. Small Business Saturday, said Anni Jones, the owner of vintage clothier Mesa Home, was a real draw for ultra-local shops like hers. The postBlack Friday event kept her store stocked with customers. “Days like this are awesome,” said Jones, 41. They’re also increasingly important, as customer habits change and online spending explodes. And U.S. economists are watching carefully. Despite a See CHEROKEE • Page A5

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

Lonni Schicker laughs next to her son, Dan Schicker, as he recounts to friends and family how he successfully pulled off a surprise birthday party at Seamus McDaniel’s in Dogtown on Sept. 29. He says he wanted to surprise Lonni because she gets anxious when a big event is coming.

I

• Retailers use new technology to capitalize on predicted jump in consumer spending. Business, C1

BY MICHELE MUNZ • St. Louis Post-Dispatch

n a far corner of the covered patio at Seamus McDaniel’s, a small crew of people hang pennants, paper pinwheels and shiny spirals — all purple, the color for Alzheimer’s awareness. § The decorations sway in a gentle breeze from the open windows and sparkle in the bright, fall sun. § The friends nervously fuss over where to hang the remaining trimmings. But Dan Schicker, 32, is calm and happy. § “She’s not even going to pay attention to the decorations,” Dan says. “She’s just going to see everyone and cry.” § It is Sept. 29, his mom’s 64th birthday. See DEMENTIA • Page A10

Homes for the holidays

• EDITOR’S NOTE: This is the fifth part in an occasional series about dementia.

A guide to home tours around the area

• LONNI’S STORY: Catch up on the series at stltoday.com/dementia

In this photo provided by Lonni Schicker, she enjoys a moment with her infant son, Dan, in 1986.

STL LIFE • B1

Jets shoot down Blues again with 8-4 win • D1

Inside the scooter-charging gig

Mexico denies deal on asylum seekers •

There’s a bounty hunt every night for people trying to juice up rides for Lime and Bird, make the math work in their favor

Faultless Linen makes move for NGA • C1

BY ERIN HEFFERNAN • St. Louis Post-Dispatch

Rural court traps woman with speeding ticket • A2

ST. LOUIS • At 9 p.m., the mad dash for St. Louis

scooters begins. Colby Koch and his husband were among many on the hunt for scooters in every corner of the city one recent night. They circled the DeBaliviere Place neighborhood in a Ford Fiesta hatchback, scanning the sidewalk as other cars on the same mission swarmed. They edged out a white SUV and loaded their first scooter into the back. They nabbed a second by flashing hazard lights while Koch jumped out of the compact car and grabbed the prize. They pulled down a side street next, only to see the scooter they had their eyes on already being loaded into a tan sedan. “Beat again,” Koch said as they pulled away. This is St. Louis’ latest side hustle: Grabbing the electric rental scooters scattered around the city and charging them overnight for scooter companies Lime and Bird. Starting at 9 p.m., those looking to make a buck

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Colby Koch harvests the last of his nightly haul of Lime scooters at Price Chopper on Goodfellow Boulevard last month. He charges the scooters at home for extra cash.

See CHARGING • Page A8

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STOLEN FUTURE

A10 • ST. LOUIS POST-DISPATCH

M 1 • SUNDAY • 11.25.2018

Dementia experts: Don’t let dread of what’s to come overshadow today BY MICHELE MUNZ St. Louis Post-Dispatch

Those who care for people with progressive forms of dementia such as Alzheimer’s disease often describe it as slowly losing someone. Their loved one is still there, yet unrecognizable. Many families’ thoughts turn to this grim future upon getting a diagnosis, said Julie Whitley, a social worker at the Memory Diagnostic Center at Washington University School of Medicine. Whitley helps connect newly diagnosed patients with support services through the Alzheimer’s Association. “I immediately start talking about grief and loss, because that is what this is,” Whitley said, “and anxiety, which is avoidance of discomfort and the unknown.” Some patients tell her they insist on going into a nursing home as soon as they can’t care for themselves. They don’t want to burden their loved ones. To help, Whitley says she starts with

questions: What kind of mom were you? What kind of dad? The answer is almost always the kind that did all they could for their child, who went to every ballgame or recital, who taught them how to fix a car or cook, who cared more than anyone. Children want to return that unconditional love, she explains. “I let them know that they love you so much, they want to do this,” Whitley said. “I try to create comfort in letting them know they are supported though this. They are not all alone.” While it is important to discuss people’s wishes while they can, it is also important to not live with dread, she added. “If we start to take up residence in that emotion, in that anxiety, then we are missing that present moment when they do recognize you, that you do have with them,” Whitley said. Cheryl Kinney, senior director of clients services with the Alzheimer’s Association Greater Missouri Chapter, helps families through what can be a

long grieving process as each ability slips away. “She can’t change. We can’t convince the person with Alzheimer’s that her son is not her husband, but we help people cope,” Kinney said. “We help them see that the person is still the same person on the inside.” Kinney helps find new ways to connect through whatever might bring happiness: reading a book aloud, sharing music, holding hands or watching birds at a feeder. Whitley said the energy each person gives is important. “If they are smiling and engaging you in a way that makes you feel joy in that moment, that’s what is important,” she said. “If you are anxious and sad because they don’t recognize you, then that’s what you are bringing to them. Even if they don’t recognize you, they can still bring you joy.”

FIVE TIPS FOR CARING FOR SOMEONE WITH DEMENTIA Alzheimer’s Association social worker Julie Whitley said she’s struck that some families she works with are thriving and resilient while others are struggling and defeated. “My caregivers that are rocking it … how do I teach that to others?” she wondered. She came up with a list of five things that seem to help: 1. A strong relationship from the beginning. There are no family issues that haven’t been dealt with. 2. Patience. Some people seem to be born with an endless amount, while others are more intolerant. 3. The firm belief and understanding that “this is the disease and not the person talking.” 4. Doing things that restore your health and energy, such as practicing your faith, gardening, writing or painting. 5. Having a good support system among family, friends or neighbors.

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

‘SHE’S TAKEN CARE OF ME MY WHOLE LIFE. THE LEAST I CAN DO FOR MY MOTHER IS TAKE CARE OF HER.’ Dan Schicker

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

Lonni Schicker becomes emotional while talking to her son, Dan Schicker, in February about their finances. Since then Dan has changed jobs, easing their money issues. Now Lonni, who has dementia, worries that taking care of her is ruining her son's life. Dan tries to reassure her. “It’s never been a burden,” he says. “It’s my mom.”

Son comes through for mom with dementia tions. “With her memory, and the way her body has been deteriorating,” he says, “I didn’t know how many opportunities we would have.”

DEMENTIA • FROM A1

Lonni Schicker thinks her son is helping some friends move and that he is going to meet her at the Dogtown neighborhood pub for dinner. But really, Dan went shopping at Party City and stopped at McArthur’s Bakery, where they wrote “Happy birthday Lonni” in yellow icing across a vanilla sheet cake with chocolate frosting. Dan has been planning the party since May, when he sent out invitations on Facebook. He’s not one to plan ahead, let alone months in advance. But his mom’s dementia has forced to him to deal with the future. To think about others. To grow up. Lonni had to quit working as a professor almost five years ago when she began having symptoms and was diagnosed with mild cognitive impairment. She moved in with Dan in his Fenton apartment. He has cared for her as medical bills drained her savings and her health worsened. Lonni was finally diagnosed with dementia in April. Her neurologist wants to see her every six months. While Alzheimer’s disease is the most common cause of progressive forms of dementia, Lonni’s neurologist suspected an equally devastating culprit — Lewy body dementia. It is also marked by loss of balance and hallucinations, which she experiences. Before leaving her job, Lonni was confident, intelligent and a source of strength for many. Now she’s feeble, confused and de-

LONNI WAS HIS ROCK

In this 1988 photo from Lonni Schicker, she holds her son Dan at a party for his second birthday at Chuck E. Cheese’s in south St. Louis County. Dan says his mom was always there for him as he grew up.

pendent. She can no longer drive and needs a walker or cane. She can’t manage her money. She needs constant assurances and reminders. Dan wanted to throw his mom a surprise party because her anticipation of big events tends to turn into anxiety. She worries about what could happen, what might not happen, who will be

there, who won’t be there. “When she gets fixated or set on something, she gets disappointed when it doesn’t go right,” Dan says. A surprise party will allow her to enjoy the moment. He has been forced to think about where his mom might be in a year. Just weeks before her party, a fall led to a back surgery, which led to other complica-

It’s always been Dan and Lonni. “My dad bolted when my mom was pregnant,” Dan said. He was a hard kid. They lived in the Dutchtown neighborhood in south St. Louis, where Dan attended what was then Cleveland High School. He was always drinking and getting in fights. “I almost dropped out twice,” he said. All the while, Lonni was his rock. She gave him the freedom to learn from his mistakes and assurance that she would always be there for him. Everyone hung out at his house because of her. She cared about his friends without judgment. She even took in a couple of Dan’s friends with unstable homes. They still consider her their mom. “She’s always been a lover and a protector,” Dan said. “That’s always been her thing.” Dan watched how hard his mom worked. After earning a nursing certificate, she earned a bachelor’s and advanced degrees while working multiple jobs as a nurse in hospitals, homes and on call during shows at the Fox Theatre. She must have struggled, but he never felt it. Everyone in their family turned to her for guidance and help. “I wasn’t the greatest kid, but I always had complete respect for

my mother … ,” Dan said. “To see how strong she was in handling those situations made me want to be more like that.” Midway through high school, Dan knew he was too easily swayed by friends. He was going down the wrong path. On his own, he enrolled at South County Technical High School, where he ended up graduating. “Without her always trying to influence me to make the right choices,” Dan said, “I would’ve ended up in jail or worse.” When Lonni had to quit her job as professor in health care administration at the University of Minnesota because of her memory problems, Dan didn’t think twice about her living with him. “She’s taken care of me my whole life,” he said. “The least I can do for my mother is take care of her.” Dan was happy playing Dungeons & Dragons, drinking and watching ballgames with friends. Now he’s had to focus more on his career and figure out how to navigate a complex disease, pay medical bills and prepare for an unexpected future. “I didn’t feel like I was in a place to be able to take care of another human being,” he said. But he’s figured things out. He’s learned how to talk his mother out of irrational thoughts and fears — while coming to grips with the fact that sometimes he can’t. “I feel helpless a lot because I just can’t fix it,” he said. See DEMENTIA • Page A11


STOLEN FUTURE

11.25.2018 • SUNDAY • M 1

ST. LOUIS POST-DISPATCH • A11

‘People can’t take care of my mom like I can’ DEMENTIA • FROM A10

Lonni feels like she’s ruining her son’s life. She fears Dan is caring for her out of guilt. Dan continually has to convince her that he wants to care for her, to stop worrying about him. “It’s never been a burden,” he said. “It’s my mom.” Dan tends to take life one day at a time and not worry about the what ifs: What if it becomes too dangerous for her to be alone while he’s at work? What if she becomes too weak? What if she does not remember who he is? “It’s hard for me to give up control. People can’t take care of my mom like I can. I know how to calm her down. I know how she is,” he said. And, he deadpans, “You know, I’m just not ready to make my own dinners.” When Dan is stressed, he tends to make jokes. He imagines convincing his mom she’s Wonder Woman: “I can’t wait until it gets to the point where I can put a superhero costume in the bathroom, and see her go out and try to save the world.”

PHOTOS BY CHRISTIAN GOODEN • cgooden@post-dispatch.com

Lonni Schicker is tested by her neurologist, Dr. Mohamed Babiker Tom Bakhit, on Nov. 1 at an appointment at Mercy Hospital St. Louis. Her dementia is causing her to lose her balance and fall, and she recently had back surgery because of problems aggravated by her falls.

GOING TO BE FINE Lonni had back surgery Sept. 4. She needed a spinal fusion because of lower back problems worsened by her falls, a symptom of her dementia. After surgery, Lonni went into a rehab facility where the incision became infected. She had to return to the hospital for another surgery to clean the wound, which meant another hospital stay and possibly more time in rehab. The night before Lonni’s second surgery, Dan takes her a bag of clothes and other items. The previous day, Lonni had texted him at least 50 times: She was in pain. She wasn’t getting her medications. Her bandages needed to be changed. Her IV needed to be cleaned. Dan walks into her dim hospital room and kisses her on the forehead. “You are going to get better care. You are going to get your meds, and you are going to be out of here in three days,” he assures her. “It’s all going to be fine.” A nurse comes to check her wound. Dan lets the nurse know a bloody piece of gauze fell on the floor. “I don’t do blood,” he jokes. Dan tells Lonni he ordered what she put in his Amazon cart: a Fit Bit, a cross-body purse she wants to hold her cellphone and lipstick, and a reacher with suction cups. “You can grab cups, you can grab anything you need,” he says. She wants the Fit Bit because it says the day of the week, she explains. “I keep forgetting what day it is.” “My scooter will be here tomorrow,” she says, beaming, thinking of how her friends pitched in to buy her a small motorized wheelchair. “No, Friday,” Dan reminds her. Lonni insists on seeing her sister, Mary Allen, who lives in the Las Vegas area, as soon as she can. “We can figure that out when the time comes,” Dan promises. He checks the messages on his phone: Praying for you bro. Sending prayers. “All these people are praying,” he tells his mom. “That’s nice,” she says, her eyes getting heavy. “And I’m getting out of here because you are falling asleep,” he says. She apologizes. Dan turns on her fan, plugs in her phone, puts a bag of M&M’s on her tray and rolls it close. He bends down, hugs her and says goodbye. “Bye, honey. I love you,” she answers. “You’re going to have surgery in the morning, and it’s all going to be good,” he says, “and you are coming home Saturday.” Then he jokes, “If someone picks you up.”

SPELL WORLD BACKWARD Complications from Lonni’s back surgery delayed her six-month appointment with her neurologist several times. Just days after her surprise party, she had to go back into a rehabilitation facility. She was well enough to leave the facility on Nov. 1 and meet Dan at her appointment with Dr. Mohamed Babiker Tom Bakhit, who goes by Dr. Tom, at Mercy Hospital St. Louis. “How is your memory?” Tom asks. Her short-term memory has gotten worse, they explain. She can’t remember what day it is. She pauses more as she talks, having to think of the right word. “Seems like people tell me all the time, ‘You already told me

Lonni Schicker takes a seat in the waiting room before the visit with her neurologist at Mercy Hospital. Twice, while she was waiting, she asked her son, Dan Schicker, what the date was. She says her short-term memory has worsened and her hands shake more.

Dan Schicker says goodbye to his mother, Lonni Schicker, after meeting her at Mercy Hospital for her appointment with the neurologist. “Seems like people tell me all the time, ‘You already told me that,’” Lonni says. “So I don’t ask questions because I’m afraid I already said that.”

that,’” Lonni says. “So I don’t ask questions because I’m afraid I already said that.” Her hands shake more, she tells him. “I can drop my phone 30 times.” Tom asks Lonni what the date is, which she already asked Dan twice while in the waiting room. “I know we had a Halloween a couple of days ago,” she says. “Eleven four?” She knows it is November. It’s fall. But she thinks it’s either Monday or Tuesday. It’s Thursday. Lonni knows the hospital, the city, the county and the state. But she doesn’t know what floor they are on. Tom asks her to spell “world” backward. “D-o-r-l-w,” she says. He asks her to count backward from 100 by 7. “93, 76, 69, 52 and 45,” she says slowly. At the start of the appointment, Tom had told her three words to remember: village, heaven and finger. He asks her to recall the words. “Village and finger … I keep thinking ‘world,’” she says, “but that was something else.” Her hallucinations are more frequent, Lonni tells the doctor. She sees animals — like a dog or a rabbit — in her room. Tom directs her to close her eyes and touch her nose. Her hands shake as she misses her nose and nearly knocks off her glasses. “Your symptoms are slowly getting worse,” Tom tells her as

he looks at her file. He brings up Alzheimer’s disease — what Lonni suspected when her memory problems first began five years ago. “It’s more clear now that you have a mixed picture,” he says. “You have features that are more consistent with Lewy body; and you have memory and fluency and language issues and even some spatial problems navigating space that is typical for Alzheimer’s.” For the first time, Lonni is prescribed Aricept, which treats confusion caused by Alzheimer’s. While there is no cure for Alzheimer’s or Lewy body disease, the drug may improve memory and awareness. Lonni and Dan take the news in stride. They’ve learned over the past five years that living with dementia is more like a roller coaster than a gradual downhill. “The problem with this disease is that there are no real definitive answers, and every doctor thinks something different and thinks they know what is going on,” Dan says. Since receiving permanent disability and finally having a regular neurologist, they trust Tom’s prognosis. “He’s really the first doctor who has taken the time and invested the time to get to know my mom,” Dan says. But they realize they’ve always had their answers. Lonni knows herself. Dan knows his mom. “At this point, I really don’t think about what doctors say

because I know what I see on a daily basis,” Dan says. “It doesn’t change anything about how we are living our lives.”

UNCONDITIONAL LOVE Two days before her surprise party, Lonni is home, wearing a portable wound suctioning device to help her heal after her second back surgery. Dan tells his mom he is leaving before sunrise to take a call at work, but he returns around 6 a.m. Lonni is asleep in a recliner in their living room. “My call was canceled,” Dan says. Then he asks an odd question, “Where am I going to sleep tonight?” In your bed, of course, Lonni answers. “Well, then where is she going to sleep?” Dan says. Allen walks in. Lonni bursts into tears. They hug. Lonni won’t let go. “I can’t believe you’re here! My sister is here! You brought my sister!” Lonni says. “I can’t believe you did this.” On the day of the party, Lonni thinks she is going with her sister to meet Dan for dinner at Seamus McDaniel’s. Dan helps her out of the car and walks her around a corner to the back of the patio. Nearly two dozen guests scream, “Surprise!” Lonni hugs each person. “I didn’t know I had this many friends,” she says, laughing. “Happy birthday!” she repeats to some who greet her.

She joins Dan and his friends in a corner. “How did I do?” Dan asks. “Two big surprises in one weekend!” His friends tell her how long he has been planning, how nervous he was over keeping it a surprise. Lonni hushes the crowd. “I want to say thank you so much for being here,” she says, “and thanks to my favorite boy.” She opens gifts — scrapbooking supplies, a tropical-scented candle and gift cards from Hobby Lobby, Ulta Beauty and Walmart. Birthday cards thank her for memories together, and more memories to come. “I hope she knows how much she is loved,” says June McCartney, 60, of Fenton, who used to care for burn patients with Lonni at the now Mercy Hospital St. Louis. “I hope she knows she’s not walking alone. We can’t walk it for her, but we can walk it beside her.” Near the end of the night, Lonni looks to Dan at the next table. “How did you do this? How did you get all these people here without me knowing a thing?” she asks. He shrugs. Dan never keeps secrets from her. They always tell each other everything. At times when she was struggling in the hospital or feeling down, Dan wanted badly to tell her his plans. To make her feel better in that moment. But he’s become more patient, better at putting himself in others’ shoes, he says. “As I’ve gotten older and had to take care of her, I’ve grown up a lot.” His mom’s back surgery and complications were a wake-up call. They had been in a good place. Dan had a new job for an IT service provider that paid more. A friend created a Go Fund Me donation page, which was helping them pay medical bills. They were less stressed, eating better and getting sleep. Dan was saving money for when his mom might need more intensive care. “I still believe I can care for her, but it just seems like this is … I guess I just fear something else could go wrong, and I won’t have her home again,” he says. “This really caught me off guard so much it kind of snapped me into some other type of sensibility.” At home, Dan installed three small cameras in their living room. He can watch his mom any time from his phone and make sure she is OK. The cameras also work as twoway microphones, in case Lonni can’t use her cellphone. While her cellphone has been her lifeline for keeping her on task, navigating it and the remote control are starting to stump her. Dan is more strict with her doctors’ orders. He’s giving in less to her protests. Lonni is changing too. She’s protesting less. She’s accepting his help. “No one has ever really taken care of me,” she says. “I’ve always taken care of everyone else.” No one has ever done anything for her just out of kindness, Lonni believes. She fears they expect something in return. Even Dan. “He wants me to be this person to accept this kindness and love for me, and I’ve always pushed away from that,” she says. “It’s hard for me to accept it for what it is.” She’s realizing that’s a sad way to live. “The person who is teaching me about love the most,” she says, “is my kid.” Michele Munz • 314-340-8263 @michelemunz on Twitter mmunz@post-dispatch.com


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

PARTLY SUNNY

TOMORROW

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


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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

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Stolen future  

A story about dementia.

Stolen future  

A story about dementia.

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