Omaha couple faces Alzheimer's together - Omaha.com
Published Monday, February 11, 2013 at 12:30 am / Updated at 1:59 pm
Omaha couple faces Alzheimer's together

Playing pool at her west Omaha home, Liz Johnson tried a shot. But she couldn't line up the pool stick with the cue ball, even though she had played so many times that aiming was automatic. Not this time. Her body tightened. Her face looked blank. Her eyes locked. A few moments later, her body relaxed, her face softened, and she took the shot. She missed. Terry Johnson looked at his wife of more than 30 years and wondered. Did she have a stroke? An aneurysm? Brain tumor?

Terry took her to the emergency room, where he and Liz described her symptoms to a doctor — memory loss, plus the alarming pool episode.

The ER physician gave her short verbal tests. Start at 100, he told Liz, and count backward by sevens.

“93,” Liz said, “86.”

Liz couldn't figure out the next number.

LIZ JOHNSON

Terry explained symptoms that he and their teenage daughter, Michelle, had noticed over the past six months. Liz would forget to meet Michelle for after-school shopping trips — ones they had agreed on that morning. She'd forget what time she scheduled lessons with her piano students and tell Terry they needed bread at the store, even though they had just bought it.

Based on those symptoms and struggles with the ER tests, the doctor referred Liz to a neurologist at the University of Nebraska Medical Center.

In August 2007, five weeks after the ER visit, after a series of brain scans, a doctor delivered a diagnosis that shook Liz and Terry hard: Alzheimer's.

She was only 57, and her husband a year older.

A former high school debater and homecoming queen, Liz ran her own Omaha music school. She played Bach and Mozart on the piano from memory and enjoyed driving herself on 450-mile round trips to visit South Dakota relatives.

She loved talking on the phone with her sisters, tackling new recipes and digging into Bible passages with Terry. She ran and lifted weights three times a week, leaving her trim and toned.

Alzheimer's is a progressive and fatal brain disease. It robs memory, tangles thinking and shackles movement. Tasks we take for granted — frying an egg, tying a shoe, chatting with a friend — become difficult, then impossible. National projections show the number of people with Alzheimer's tripling during the next 40 years.

How the story happened


World-Herald features reporter Michael O'Connor found Liz and Terry Johnson through the University of Nebraska Medical Center. Officials there contacted Dr. Dan Murman, whose office asked the Johnsons if they were interested in participating in a story.

The Johnsons agreed. O'Connor first contacted the couple in December 2011 and spent a year following their trek through the disease. With the couple's permission, he visited their home and joined them for a doctor's appointment and for Liz's 63rd birthday party. The reporter interviewed Liz's doctor, family members, friends and Liz's high school debate partner.

Terry Johnson told the newspaper that they chose to share their story to educate people about Alzheimer's and offer hope and encouragement to patients and families living with it. We appreciate their willingness to open their lives.

Features editor Betsie Freeman

Liz was among those hit with early onset of the disease, a group that's growing as the baby boom generation ages. Early onset — Alzheimer's before age 65 — affects 4 percent of patients. Many patients with early onset, also known as younger onset, are in their 50s or early 60s.

Alzheimer's becomes a struggle for anyone, but people with early onset can face more complicated problems. They have children at home and careers. And they have difficulty finding caregivers and appropriate help because services are typically aimed at patients in their 70s and 80s.

Liz and Terry had a teenage daughter and looked forward to a long retirement. After the diagnosis, they talked honestly.

Both knew her symptoms would intensify with each month, with each year. Terry made a promise. They would face the disease together — as husband and wife. They would draw on their faith in God for courage, guidance and hope.

The disease would become a relentless hammer that would leave Liz unable to talk, walk or go to the bathroom by herself. It would change their wedded lives more than they could have imagined when they proclaimed their vows.

* * *

Liz loved a good conversation, even as a girl growing up on a farm in Tripp, S.D. When people asked her how school was going, she didn't deliver a typical little-kid, one-note answer. Instead, she offered nuggets, conversation-starters, like naming her newest spelling words.

She grew up with a pack of brothers and sisters, a household of nine kids, on a 500-acre farm, 225 miles northwest of Omaha.

As third from the youngest, she mothered her little brother and sister. Her sister was so shy in first grade that Liz, a second-grader, marched into the younger girl's classroom every day like a restaurant hostess and led her to lunch.

PHOTO SHOWCASE: Liz and Terry Johnson's Alzheimer's struggle

Liz had a quiet side, a thinking side. She loved playing table games, winning big at Scrabble when she came up with words that stretched across the board.

Music became a passion for Liz when her family received an old upright piano. At age 8, she started plunking the keys after a few lessons from a sister.

Liz excelled on her high school debate team. She never backed down, even when the team from her 125-student school competed against bigger ones from places like Sioux Falls. Other debaters sometimes frantically thumbed through their research files, searching for the right index card. Liz organized her file so well that she could quickly pluck the right one.

In 1968, she enrolled at South Dakota State University, completed her freshman year, then transferred to Ambassador College in Pasadena, Calif.

She earned a degree in religious studies, but her move west would turn out more important for another reason.

* * *

Liz glowed in her pink dress on a summer day in 1974, her lean body tanned by the California sun, her blonde hair falling to her shoulders.

LIZ JOHNSON

The 24-year-old graduate worked in an office on the Ambassador College campus. Terry, 25, had arrived for graduate courses and spotted Liz the minute he walked into the office.

Who is this pretty girl in pink?

A few days later, they chatted in the student union after Terry asked to borrow a pen, and he soon asked her out. For their first date, they dined on the patio of a hotel restaurant as a band played.

They danced after dinner, and soon started dating regularly, this South Dakota girl and Texas boy.

They discovered they shared a passion for Christ and attended church services and Bible studies together.

Terry grew up in northeast Texas, where his father was a grain elevator foreman.

His dad was a good husband and father, but he struggled with alcoholism, sometimes driving away in his pickup for drinking binges in nearby towns. When Terry was a teenager, he'd drive with his mom to bring his father home. His mother didn't complain, because she loved her husband and knew he wanted to get better.

His parents' marriage lasted more than three decades, ending in 1975 when his father died of heart disease.

Terry and Liz Johnson pictured at their wedding in 1975.

Terry attended college in Texas, majoring in theology. He became an assistant pastor before heading to California for additional studies.

He and Liz married in 1975, then lived in Canada for 14 years while Terry served as a church pastor. They moved to Omaha in 1989 when Terry took a ministerial position here.

Omaha became their home. Here they would raise their adopted daughter, now 24.

Here Liz and Terry's wedding vow — to have and to hold in sickness and in health — would face the biggest test.

* * *

Tears streamed down Liz's face as she rode with Michelle along Dodge Street on a spring day in 2008.

Six months had passed since the diagnosis, and Michelle had been reluctant to talk about it with her mom. Michelle was a 19-year-old college student at the time, and couldn't bear to think about what the disease would do.

As Michelle drove, she opened up. I'm angry, she told her mom. Angry at the disease. Angry that Alzheimer's was stealing her mother.

Since the diagnosis, Liz had shown courage and hope, but on this day she sobbed.

She told her daughter she was scared, scared of missing the milestones — helping Michelle pick out a wedding dress someday, watching her walk down the aisle, holding grandchildren.

After researching the disease, Liz knew what she faced.

She and Terry learned details about a healthy brain: It weighs just three pounds and feels like firm jelly. She learned that Alzheimer's kills nerve cells and destroys tissue throughout the brain. As the disease attacks, the brain's outer layer begins shriveling, damaging areas that help us think, plan and remember.

No cure exists. Drugs can help temporarily control symptoms but they cannot halt the disease.

Doctors don't yet fully understand what causes Alzheimer's, although family history likely plays a role. People who have a parent or sibling with the disease appear to be at higher risk. One of Liz's older sisters has it.

Patients with end-stage Alzheimer's become bedridden. Complications, such as blood clots that form in the leg and travel to the lungs, can be the cause of death.

For some patients, digestion and respiration begin shutting down when the disease invades the brain stem. Patients stop eating and sleep most of the time, and their hands and feet begin to feel cold. Eventually, they stop breathing.

Recent research suggests that Alzheimer's can start assaulting the brain years before symptoms arise.

Chances are likely, Liz's doctor said, that on the day of her diagnosis in 2007, her brain was already damaged.

The disease's march through Liz's memory, through the nerve cells controlling every word she spoke, every move of her arms, legs and fingers, would never cease.

* * *

Before Alzheimer's, Liz could turn a few chicken breasts and spices into a savory casserole or a tasty enchilada with just the right seasoning.

She could whip up moist chocolate cakes or creamy custard pies, Terry's favorite.

About early onset Alzheimer's


* People who develop Alzheimer's symptoms before age 65 are considered to have early onset, also known as younger onset.

* Early onset is rare, affecting 4 percent of the 5.4 million Americans with Alzheimer's.

* Early onset can strike people who are in their 30s, but that is very uncommon. Generally people with early onset are in their 50s or early 60s.

* Early onset can run in families. Some people with early onset have a parent or grandparent who also developed Alzheimer's at a younger age.

* Diagnosing early onset can be difficult. Because the person is young, symptoms might mistakenly be attributed to stress or other health problems.

Sources: Mayo Clinic, Alzheimer's Association

She fixed more than a dozen dishes and desserts from memory, but by fall 2008, she thumbed through recipes.

How much cumin for the enchiladas? How much salt for the casserole? What oven temperature for the cake?

That same year, Liz gave up driving after she nearly turned in front of another car on West Center Road.

The disease also had forced Liz to sell her music school. For 16 years, she'd had a studio in west Omaha for Kindermusik, a program for children from newborn through age 7, and enrollment reached more than 150.

Several other teachers helped. But Liz, who went back to school and earned a music degree, taught most of the classes, set lesson schedules, managed the studio's budget, purchased supplies and updated the school's website.

Liz loved teaching, and she was good at it. Step into her classroom and you'd spot her kneeling at the children's level.

But Liz's teaching slipped as she began losing track of what came next in a lesson. She no longer could order supplies and oversee the budget because it was too complicated.

Her symptoms escalated throughout 2009 and 2010, affecting more of her life at home. Over the years, Liz had done most of the cooking and laundry, but Terry had to take over.

She couldn't do laundry because she couldn't remember how to set the washer, and she couldn't cook or bake anymore. She could easily leave a pan on the burner, walk away and forget it.

Terry wanted Liz to keep her dignity, to let her do as much as was safely possible as long as possible.

So after Terry washed and dried the clothes, they both folded.

When Terry fixed a salad, Liz grabbed the tomato from the fridge.

Their daughter, Michelle, had her own apartment but brought meals to her parents.

She also pampered her mom, doing things that were important to Liz: painting her nails, curling her hair, putting on jewelry.

In 2011 — four years after the diagnosis — Terry hired caregivers to stay with Liz while he was at work. He's an adjunct professor at Grace University.

Terry enjoyed golfing a couple times a month, but he gave that up. He loved playing card games like hearts with other couples, but that ended as Liz's symptoms worsened.

Liz no longer understood that Thursday followed Wednesday or that Friday landed before the weekend, or even what a weekend was.

She had more and more trouble keeping her balance and finding the right words.

Instead of saying, “let's take the car,” she might say, “let's take the star.”

She could tell you her name, but not her phone number, and she could speak only in single words or phrases.

For Liz, the chatty child and sharp-minded high school debater, conversations ended.

* * *

The fireplace glowed on a cold evening in January 2012 as Liz and Terry sat in their family room, watching “Murder, She Wrote.”

Liz loved ice cream, and Terry had scooped a bowl of vanilla for each of them.

Terry put his arm around his wife's shoulder and pulled her close.

From the beginning of their trek through Alzheimer's, Liz and Terry decided they would never give up enjoying their time as husband and wife, never put their lives on hold.

They joined an Alzheimer's support group and became advocates for patients, traveling to Washington, D.C., where Liz shared her story with Nebraska lawmakers. They traveled for fun, including a dream trip to Egypt and Israel where they saw the pyramids, Mount Sinai and walked the path of Jesus in Jerusalem.

Mostly, though, they enjoyed simple moments at home. Listening to Neil Diamond — Liz's favorite. Taking their dog Mazie for a walk.

When the TV show ended, Terry held Liz's hand and helped her stand. He walked her down the hallway to their bedroom in kind of a tandem shuffle, standing behind her like a shadow, holding the back of her shoulders.

When Liz stepped with her right foot, so did Terry.

When Liz stepped with her left foot, Terry did too.

Terry Johnson assists his wife Liz Johnson at Angel's Touch care home Nov. 10. Photo: KENT SIEVERS / THE WORLD-HERALD

Terry hadn't always been so patient.

Earlier in their marriage, before Alzheimer's ever affected Liz, Terry could become a little testy. Nothing dramatic. Just typical husband-wife moments. Liz might ask questions about a financial investment they made, even though Terry felt he had already explained it. Why do we need to go over this again, he'd say.

Liz, too, had her quirks, her imperfections, long before Alzheimer's. Though she loved fresh veggies, she couldn't resist digging into a bag of chips. She snored occasionally and Terry would nudge her, and it seemed she was always searching for her car keys.

Alzheimer's forced Terry to dig deep for patience because nothing came easy for Liz, like getting dressed for bed.

On this night, just like hundreds before, Liz sat on the edge of their bed. Terry knelt beside her, telling his wife to lift her foot, and then the other so he could slip the pajama leg on.

Then Liz and Terry shuffled into the den, and settled into cushy arm chairs.

Throughout their marriage, Liz and Terry made time each day to read scripture, then talk about how it fit their lives.

As a lamp shined softly, Terry read from the Gospel of Matthew.

Terry and Liz knew now, more than ever, that God strengthened them one day at a time.

“Therefore do not worry saying, 'What will we eat?,' or 'What will we drink?' ... Strive first for the kingdom of God and his righteousness, and all these things will be given to you as well. So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today.”

* * *

Liz's body trembled as she sat in a doctor's exam room.

RELATED: Alzheimer's Q&A

Her eyes looked straight ahead, her body leaned forward and her legs were pressed together, almost as if they were bound.

It was August 2012 — five years after her diagnosis — and Terry had brought Liz for an exam by her neurologist, Dr. Dan Murman of UNMC.

Liz was nearing the seventh and final stage of Alzheimer's.

Before the doctor stepped in, a nurse practitioner asked Terry if he had concerns. Liz continues to eat less and less, and has lost weight, Terry said. He must cut all her food into bite-sized pieces, and she can no longer feed herself. She also cannot sleep through the night, waking up as many as four times to use the bathroom with Terry's help.

The nurse checked whether Liz could follow simple instructions.

Tom Stoebner and Sue Stulc take their sister Liz Johnson out for an autumn stroll Nov. 10. Photo: KENT SIEVERS / THE WORLD-HERALD

Put your thumb and index finger together, the nurse told Liz. The nurse showed Liz how.

Liz's fingers didn't move.

Dr. Murman came in and asked Liz how she was doing.

She remained silent.

Terry asked the doctor's opinion about their next step. He knew his wife soon would require 24-hour care in a home for Alzheimer's patients and wanted to know if the time was right.

“Now,” the doctor told Terry, “is a very appropriate time. You've been doing an amazing job at home.”

Terry selected an Omaha home called An Angel's Touch because he believed it had a reputation for treating patients with dignity.

For the first time since their wedding on a warm California day 37 years ago, Liz and Terry would live apart.

* * *

Liz leaned back in a recliner, her arms wrapped around a stuffed bear.

The skin on her face looked soft and pink.

Epilogue


Photos of Liz's life flashed on a tall screen at King of Kings Lutheran Church on a clear December day.

One showed Liz as a little girl sitting in a wagon on her family's farm. Another showed her teaching her music students, and one captured her, Terry and their daughter smiling on a Colorado mountainside.

A piano player performed “Amazing Grace” as family and friends sang at Liz's funeral.

Terry stood at the front of the church and spoke.

He told the crowd that Liz, 63, played many roles in life: a child of God, a devoted and loving mother, a gifted musician, a caring teacher.

Finally, he said, Liz was a wife, his wife, his greatest blessing.

"God," Terry said, "gives only good gifts."

--Michael O'Connor

She beamed.

It was November 2012, and a sister and brother were visiting Liz at An Angel's Touch, where she had moved two months before to receive hospice care.

Liz's sister, Sue Stulc of Hutchinson, Minn., knelt by her side in the sunroom and stroked her hand.

Sue and her brother told stories about all of them growing up on the farm more than five decades ago.

Liz tried to speak.

“Remember that time ... ” Liz said. Her voice trailed off.

Her sister leaned in closer.

“You have a story in your mind,” her sister said. “We're listening, Liz. We're still listening.”

One month later, in early December, Terry started sleeping on a couch outside her room. The hospice nurse told him Liz had only a few more days, and Terry wanted to be close.

Her daughter, Michelle, sat by her bed and sang “You Are My Sunshine,” just as her mom did for her years ago.

On Dec. 4, Liz's breathing became rapid, her body began feeling cool. That evening Terry sat on a chair beside her bed and prayed, thanking the Lord for their life together.

A few hours later, Liz's breathing calmed and Terry reached his hand under her cover.

He held her hand, and squeezed.

Just before she took her final breaths, just before Alzheimer's lost its grip, Liz squeezed back.

Contact the writer: 402-444-1122, michael.oconnor@owh.com

Contact the writer: Michael O'Connor

michael.oconnor@owh.com    |   402-444-1122    |  

Michael is a general assignment reporter for the Living section, covering a mix of topics including human interest stories.

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