As Alzheimer’s disease ravages the spirit of a Lincoln woman, her daughter says a long goodbye | Health and fitness

Candy Carter doesn’t know exactly when she made the promise that has consumed so much of her life over the past three years, the promise she has at times regretted and almost broken, but has so far kept. .

Her mother, June Thomas, worked as a medical aide at a Minneapolis nursing home for nearly three decades before moving to Lincoln, where she made her daughter swear not to move her to the type of facility in which she had worked for 27 years.

Carter assumes she agreed to the pact in the mid-2010s, before her mother started repeating stories and neglecting her bills, before she first called her daughter a bitch, and long before that doctors would diagnose dementia caused by the South Dakota native. by Alzheimer’s disease in 2020.

In the years that followed, Carter paid for the promise she made.

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She missed work and vacations, as Thomas’ caregiver. She gave up her passion, photography, to spend more time with her mom. She shelled out over thousands of dollars to pay her mother’s unpaid bills and to keep her in her condo east of Lincoln.

June Thomas and her daughter Candy Carter cuddle Molly, a therapy cat who helped Thomas cope with his dementia, at his apartment complex in Lincoln.


And though her mother’s closest child — the other three live out of state — Carter has at times felt estranged from the woman she cares for, as a progressive illness destroys her memory and her cognitive functions and strips away the parts of June Thomas that make her Carter’s mother.

“But I know I’ll never feel guilty for breaking that promise,” Carter says from her mother’s living room, where too many spills have permanently stained the carpet.

“To me, a promise is important. A promise is your word.”

Before she was one of 35,000 people living with Alzheimer’s disease in Nebraska, Thomas was a single mother of five who ran a bar and sang in nightclubs, her daughter says.

Born in June 1939 to Irish-American parents, Thomas was one of eight children growing up in South Dakota. She married young and soon divorced. She loved to travel. She didn’t take bullshit, her daughter said.

“Not the kind I’ve seen cry a lot,” Carter says, and soon her mother cuts her off.

“Rosie, I have to go potty,” Thomas said, turning to his home caregiver, Rosanna Herder, minutes after she returned to her recliner after a bathroom break.

“You just potty, Mom,” Carter said. “See, that’s – she forgets.”

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June Thomas is helped from her seat by her caregiver, Rosanna Herder, in her apartment in Lincoln.


Memory lapses are often the first signals that prelude a possible diagnosis of Alzheimer’s disease, and often these signals are met with indifference, simply attributed to the effects of aging, said Heather Morgan, a geriatrics expert based in Omaha who practiced medicine for more than 20 years.

The impact of the disease gradually worsens over several years, as deposits of abnormal proteins called amyloid and tau build up in and around brain cells, stealing cognitive function over time, eventually causing – or contributing to – to death.

“I think a lot of people understand that you can die from kidney failure, you can die from heart failure,” Morgan said. “Alzheimer’s dementia is really chronic brain failure.”

The seventh leading cause of death in the United States and in the nine counties surrounding Lincoln, Alzheimer’s disease has killed more and more people over the past two decades.

Fewer than 100 people died from the disease each year in the Lincoln area in previous decades, while Alzheimer’s disease killed 91 people in 1999, 89 in 2000 and 90 in 2001, according to CDC data. But from 2016 to 2020 — the latest year for which CDC data is available — the disease killed an average of 152 people a year in the nine-county region.

The Alzheimer’s Association, a national nonprofit organization that focuses on supporting patients and investing in research, predicts that diagnoses will increase another 14% in Nebraska over the next three years, predicting that 40 000 Nebraskans will be living with the disease by 2025.

“Our population is aging, isn’t it? said Sharon Stephens, executive director of the association’s Nebraska chapter. “And as we get older and this group grows, there will be more Alzheimer’s and dementia. So no matter where you live, that’s a concern.”

Adding to what Stephens described as the state’s “mathematical problem” is the incalculable burden placed on unpaid caregivers – often aging spouses or adult children – who number 60,000 in Nebraska, and included Carter when her mother’s behavior began to change in 2018.

At first, says Carter, the differences were subtle. She repeated herself and misremembered the names of her children and grandchildren. She stopped driving and stopped taking the long walks that once occupied her days.

Later, Carter learned that Thomas had begun hoarding and neglecting his health. His apartment, Carter recalls, was cluttered from floor to ceiling with trash that Thomas couldn’t part with. She had wrapped her legs in bandages to hide growing sores on her legs. She hid her condition from her daughter.

“I became his caregiver, not his daughter anymore,” says Carter, who has children and grandchildren and a full-time third-shift job in the state’s juvenile corrections system.

At first, Carter’s role included grocery shopping and cleaning, tasks she performed before or after working nights at the Department of Corrections. She would fall asleep in a century-old rocking chair in her mother’s living room, there in case Thomas needed her.

Soon, however, Thomas could no longer cook his own meals or bathe himself, and Carter, suffering from hip problems, had to pay out of pocket for help to help his mother shower.

And Carter installed a Ring-style camera inside her mother’s condo, which alerted her when the 83-year-old tried to leave in the middle of the night, sometimes in a state of undress, as she woke up disoriented .

Doctors then diagnosed Thomas with Sundowner syndrome, the term applied to a cluster of symptoms that can appear in dementia and other patients with memory loss, which can cause confusion, anxiety and a wandering in the late afternoon that continues into the night.

“I showed (the doctors) the video of my mother, at 3 a.m., walking around, screaming for her sister, who died,” Carter said. “Walk around, at the door, try to open it and get out.”

The stress of caregiving took its toll on Carter, who said her close relationship with her six grandchildren suffered as her attention turned to Thomas. She called care facilities and even visited one, weighing the cost she was paying to watch over her mother and the guilt that threatened her if she didn’t.

“It became too much for me,” she says.

And then Carter suffered a stress-induced transient ischemic attack, or mini-stroke, in early 2021. Hospital staff approached her about her stress levels, she said, and so she fulfilled them – on her mother’s diagnosis, on the toll he had taken, on the promise she had made.

Staff referred Carter to Aging Partners, a city service focused on supporting aging residents and their caregivers, where staff helped Carter obtain a Medicaid waiver for her mother’s care.

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June Thomas, who suffers from Alzheimer’s disease, is kissed on the cheek by her carer Rosanna Herder (left) and her daughter Candy Carter, at her apartment in Lincoln.


The waiver covers companion care at home for 67 hours a week, which has primarily involved Herder, a local Right at Home care service provider who has spent every weekday with Thomas since March. Carter calls it a lifeline.

Her burden has lessened, Carter says she enjoys her mother’s company in a way she couldn’t before being exempt from Medicaid. She is Thomas’ daughter again – a fact that brings both joy and fear.

Carter did the research. She knows that dementia is not strictly hereditary, but that genetics plays a role. His grandmother – Thomas’s mother – had the disease, and Carter knows that one day she may soon have it too.

At her mother’s apartment on her 64th birthday, Carter is not celebrating. She faces a grim reminder of the brutal costs of Alzheimer’s disease, saying a long goodbye to what remains of her stubborn mother.

“Mom is sleeping in her chair. She won’t be sleeping in her bed,” Carter said, before Thomas cut her off.

“One of the worst things to catch is old age dementia,” her mother says.

“It’s true,” Carter said. “That’s what you told me.”

“Yes, that’s true,” said Thomas.

“But you see, Mom, you’re lucky, because you’re in your own house, aren’t you?” Carter said. “I kept that promise.”

Carter begins to explain that Thomas knows she has dementia, that she’s frustrated with it, that she’s been talking more and more lately about the disease and what it’s taken from her.

But before she has finished her thought, Thomas interrupts her again.

“Senior dementia is one of the worst things to catch,” she says.

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Contact the writer at 402-473-7223 or [email protected]

On Twitter @andrewwegley

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