Mental Health

After Nearly 60 Years of Marriage, This Missouri Couple Stayed Together to the End

Arthur Kelley could barely raise his voice above a whisper last fall when he told a nursing assistant he never wanted his wife, Maggie, to be alone. After almost 60 years of marriage, five children and a lifetime filled with more victories than defeat, Kelley wanted to be there for his ailing wife, even if she didn’t know he was there.

He got to be there for her. But like so many other people who have died of covid-19, he died without his family.

Dementia had stripped Maggie Kelley of her memory, so her family had moved her into a nursing home in 2015. Arthur, who had received care for Parkinson’s disease at home, moved to the same facility in the St. Louis suburbs two years later to be closer to Maggie.

“It was a literal choice to go be there with Mom,” said their youngest son, Kevin Kelley. “He really desired to be there.”

Their parents shared meals, watched television and slept in the same room for three years. They were separated only once, when Maggie, 81, contracted an asymptomatic case of covid early in August.

“He protected her like Superman protects Lois Lane,” said their oldest daughter, Lisa Kelley-Tate. “That’s how he was with her.”

Arthur and Maggie Kelley celebrating an anniversary leading the Greater Faith Missionary Baptist Church. The couple died 30 days apart in 2020. A double funeral marked the end of nearly 60 years together as a married couple.(Derrick Varner)

Arthur, 80, would often ask when he could see his wife again.

“He wanted to make sure he didn’t pass before she did,” Kelley-Tate said a staffer at the nursing home told her. “It was his job to make sure he was there for her. Maybe he knew then that his time wasn’t going to be long.”

Maggie finished her quarantine and they reunited. But only briefly. She died of complications of dementia on Nov. 2.

That afternoon, Arthur held her hand as long as he could. When Kelley-Tate arrived, he was still holding on, so she took her mother’s other hand. She carefully painted Maggie’s nails red, her favorite color. But Arthur still wanted more time with Maggie.

“It took a while before he had me call the mortician to come pick her up,” Kelley-Tate recalled. “He said, ‘I want her here with me just a little longer.’”

Maggie and Arthur grew up together in Coffeeville, Mississippi, a small town about 90 miles south of Memphis, Tennessee. Maggie was the daughter of a teacher and a farmer. Arthur helped his family run its dry-cleaning business. He also learned to play the piano well enough to perform in juke joints and churches.

Their relationship bloomed in high school. Arthur took Maggie to the prom before they headed off to college. Maggie attended two historically Black colleges in Mississippi: what’s now known as Alcorn State University in Lorman and Rust College in Holly Springs. Arthur left the South for the Midwest, where he attended Southern Illinois University in Carbondale.

After their wedding on June 3, 1961, in Coffeeville — Maggie walked down the aisle in a lace dress with a sweetheart neckline; Arthur wore a white jacket and a wide grin — the couple decided to put down roots in St. Louis. Their lives revolved around the children they soon had, church and music. Maggie taught elementary school and took care of the children while Arthur studied speech pathology.

“They would always talk about how they would work together,” said their youngest daughter, Gina Kelley. “They worked as a team.”

The couple attended Central High School in Coffeeville, Mississippi, a small town about 90 miles south of Memphis, Tennessee. Maggie graduated with the class of 1956. Arthur earned his high school diploma in 1957. (Kelley Family)
Arthur Kelley became the pastor of Greater Faith Missionary Baptist Church in north St. Louis in 1977. Arthur and Maggie Kelley pose for a photo in the early 1990s at the church. (Erma Moore)

Arthur became the pastor of Greater Faith Missionary Baptist Church in 1977. He juggled life as a speech pathologist and minister, their children said. Maggie, who at this point was home raising the kids full time, established a routine for them that included prayer time, gospel music and home-cooked meals, including her beloved “Heath bar cake.”

Arthur and Maggie Kelley stayed dedicated to each other, in good times and bad. One of their toughest moments was the death of their 3-year-old son, Arthur Jr.

In their final years, both struggled with their health, but they never complained about their conditions. They leaned on their faith instead as he pushed through the challenges caused by Parkinson’s disease while her dementia progressed.

“At times, I said if my father had my mom’s body and my mom had my father’s brain we would be all good,” their son Kyle Kelley said.

After Maggie died, Arthur helped his children make funeral arrangements for her. He picked out her casket, and then he selected one for himself. Two of his children lifted him out of a chair so he could see the inside.

“He said, ‘I like that,’” Kelley-Tate recalled. “I said, ‘OK, we’ll keep that in mind,’ not thinking it would happen 30 days later.”

He too had contracted covid, one of the more than half-million nursing home residents nationwide to catch the contagious virus. Arthur wanted to attend his wife’s service, so his family decided to hold off on the funeral until he got better.

He never recovered. Exactly one month after Maggie’s death, he died in the covid ward of a nearby hospital. No family was allowed to be with him. A nurse called Kelley-Tate by video after he died.

But the family came together for what was now a double funeral with the caskets close to each other — the mauve one Arthur had picked for Maggie and the mahogany casket he had picked for himself.

4 Vital Health Issues — Not Tied to Covid — That Congress Addressed in Massive Spending Bill

Late last month, before President Joe Biden took office and proposed his pandemic relief plan, Congress passed a nearly 5,600-page legislative package that provided some pandemic relief along with its more general allocations to fund the government in 2021.

While the $900 billion that lawmakers included for urgent pandemic relief got most of the attention, some even bigger changes for health care were buried in the other parts of that huge legislative package.

The bundle included a ban on surprise medical bills, for example — a problem that key lawmakers had been wrestling with for two years. Starting in 2022, because of the new law, patients generally will not pay more for out-of-network care in emergencies and at otherwise in-network facilities.

But surprise bills weren’t the only health care issue Congress addressed as it ended a tumultuous year. Lawmakers also answered pleas from strained health facilities in rural areas, agreed to cover the cost of training more new doctors, sought to strengthen efforts to equalize mental health coverage with that of physical medicine and instructed the federal government to collect data that could be used to rein in high medical bills.

Here are some details about those big changes Congress made in December.

Rural Hospitals Get a Boost

Throwing a lifeline to struggling rural health systems — and, it appears, a bone to an outgoing congressional committee chairman — lawmakers gave rural hospitals a way to get paid by Medicare for their services regardless of whether they have patients in beds.

The law creates a new category of provider, known as a “rural emergency hospital.” Starting in 2023, some hospitals will qualify for this designation by maintaining full-time emergency departments, among other criteria, without being required to provide in-patient care. The Department of Health and Human Services will determine how the program is implemented and which services are eligible.

Medicare, the federal insurance program that covers more than 61 million Americans 65 and older or with certain disabilities, currently does not reimburse hospitals for emergency or hospital outpatient services unless the hospital also offers in-patient care.

That requirement has exacerbated financial problems for rural hospitals, many of which balance serving communities with fewer patients and less need for full in-patient services with the need for emergency and outpatient services. One study last year found 120 rural hospital facilities had closed in the past 10 years, with more at risk.

Hospital groups have praised the change, which was introduced by Sen. Chuck Grassley (R-Iowa), who has championed rural health issues and ended his term as chairman of the Senate Finance Committee this month. “I worked to ensure rural America would not go overlooked,” he said in a statement.

Medicare Invests in More Doctors

Hoping to address a national shortage of doctors that has reached critical levels during the pandemic, Congress created an additional 1,000 residency positions over the next five years.

Medicare will fund the positions, which involve supervised training to medical school graduates going into specialties like emergency medicine and are distributed among hospitals most in need of personnel, including rural hospitals.

Critics like The Wall Street Journal’s editorial board have noted this is Congress’ attempt to fix a problem it created in the late 1990s, when lawmakers capped the number of Medicare-funded residency positions in the United States, fearing too many doctors would inflate the cost of Medicare.

While Medicare is not the only source of educational funding and hospitals may add their own residency slots as needed, Medicare generally will reimburse hospitals for the number of residents they had at the end of 1996. Among other consequences of that 1996 cap, most Medicare-funded residencies are clumped at Northeastern hospitals, a 2014 study showed.

In contrast to the 1,000 positions created as part of the stimulus package, one bipartisan proposal in 2019 that was never enacted would have added up to 15,000 positions over five years.

Strengthening Mental Health Parity

The legislative package strengthens protections for mental health coverage, requiring federal officials to study the limitations insurance companies place on coverage for mental health and substance use disorder treatments.

In 1996 Congress passed the first law barring health insurers from passing along more of the cost for mental health care to patients than they would for medical or surgical care. The Affordable Care Act, building on earlier laws, made mental health and substance use disorder treatments an “essential health benefit” — in other words, it required most health insurance plans to cover mental health care.

But enforcing that standard has been a challenge, in part because violations can be hard to spot and the system has often relied on patients to notice — and report — them.

In December, lawmakers approved a measure requiring insurers to analyze their coverage and provide their findings to state and federal officials upon request.

They also instructed federal officials to request the findings from at least 20 plans per year that may have violated mental health parity laws and tell insurers how to correct any problems they find — under penalty of having insurer violations reported to their customers if they do not comply.

The law requires federal officials to publish an annual report summarizing the analyses they collect.

More Transparency in Cost and Quality

Americans often do not know how much they will be expected to pay when they enter a doctor’s office, an ambulance or an emergency room.

Taking another modest step toward transparency, Congress banned so-called gag clauses in contracts between health insurers and providers.

Among other things, these sorts of “gag” restrictions previously have prevented insurers and group health plans from sharing with patients and others — such as employers — information about a provider’s prices or quality. The December legislation also prohibited insurers from agreeing to contracts that prevent them from getting access electronically to claims and other information from providers on behalf of the insurer’s enrollees.

In 2018, Congress banned gag clauses in contracts between pharmacies and insurers or pharmacy benefit managers. Those gag clauses had prevented pharmacists from sharing cost information with patients, like whether they could pay a lower price for a prescription by paying out-of-pocket rather than using their insurance coverage.

The proposal approved in December’s legislation came from a big, bipartisan package of health care cost fixes passed in 2019 by the Senate Health, Education, Labor and Pensions Committee, but not by the rest of Congress. The committee’s Republican chairman, Sen. Lamar Alexander of Tennessee, retired from Congress this month. His Democratic partner on that package, Sen. Patty Murray of Washington, will take over the chairmanship as Democrats assume control of the Senate and has vowed to focus on health care affordability.

Consumers First, a health consumer-focused alliance of health professionals, labor unions and others, led by Families USA, praised the ban. The change is “a significant step forward” to stop “the abusive practices from hospitals and health systems and other segments of the health care sector that are driving up health care costs and making health care unaffordable for our nation’s families, workers, and employers,” it said in a statement.

KHN senior correspondent Sarah Jane Tribble contributed to this report.

Alzheimer’s Inc.: Colleagues Question Scientist’s Pricey Recipe Against Memory Loss

When her husband was diagnosed with early-stage Alzheimer’s disease in 2015, Elizabeth Pan was devastated by the lack of options to slow his inevitable decline. But she was encouraged when she discovered the work of a UCLA neurologist, Dr. Dale Bredesen, who offered a comprehensive lifestyle management program to halt or even reverse cognitive decline in patients like her husband.

After decades of research, Bredesen had concluded that more than 36 drivers of Alzheimer’s cumulatively contribute to the loss of mental acuity. They range from chronic conditions like heart disease and diabetes to vitamin and hormonal deficiencies, undiagnosed infections and even long-term exposures to toxic substances. Bredesen’s impressive academic credentials lent legitimacy to his approach.

Pan paid $4,000 to a doctor trained in Bredesen’s program for a consultation and a series of extensive laboratory tests, then was referred to another doctor, who devised a stringent regimen of dietary changes that entailed cutting out all sugars, eating a high-fat, low-carbohydrate diet and adhering to a complex regimen of meditation, vigorous daily exercise and about a dozen nutritional supplements each day (at about $200 a month). Pan said she had extensive mold remediation done in her home after the Bredesen doctors told her the substance could be hurting her husband’s brain.

But two years passed, she said, and her husband, Wayne, was steadily declining. To make matters worse, he had lost more than 60 pounds because he didn’t like the food on the diet. In April, he died.

“I imagine it works in some people and doesn’t work in others,” said Pan, who lives in Oakton, Virginia. “But there’s no way to tell ahead of time if it will work for you.”

Bredesen wrote the best-selling 2017 book “The End of Alzheimer’s” and has promoted his ideas in talks to community groups around the country and in radio and TV appearances like “The Dr. Oz Show.” He has also started his own company, Apollo Health, to market his program and train and provide referrals for practitioners.

Unlike other self-help regimens, Bredesen said, his program is an intensely personalized and scientific approach to counteract each individual’s specific deficits by “optimizing the physical body and understanding the molecular drivers of the disease,” he told KHN in a November phone interview. “The vast majority of people improve” as long as they adhere to the regimen.

Bredesen’s peers acknowledge him as an expert on aging. A former postdoctoral fellow under Nobel laureate Stanley Prusiner at the University of California-San Francisco, Bredesen presided over a well-funded lab at UCLA for more than five years. He has been on the UCLA faculty since 1989 and also founded the Buck Institute for Research on Aging in Marin County. He has written or co-authored more than 200 papers.

But colleagues are critical of what they see as his commercial promotion of a largely unproven and costly regimen. They say he strays from long-established scientific norms by relying on anecdotal reports from patients, rather than providing evidence with rigorous research.

“He’s an exceptional scientist,” said George Perry, a neuroscientist at the University of Texas-San Antonio. “But monetizing this is a turnoff.”

“I have seen desperate patients and family members clean out their bank accounts and believe this will help them with every ounce of their being,” said Dr. Joanna Hellmuth, a neurologist in the Memory and Aging Center at UCSF. “They are clinging to hope.”

Many of the lifestyle changes Bredesen promotes are known to be helpful. “The protocol itself is based on very low-quality data, and I worry that vulnerable patients and family members may not understand that,” said Hellmuth. “He trained here” — at UCSF — “so he knows better.”

The Bredesen package doesn’t come cheap. He has built a network of practitioner-followers by training them in his protocol — at $1,800 a pop — in seminars sponsored by the Institute for Functional Medicine, which emphasizes alternative approaches to managing disease. Apollo Health also offers two-week training sessions for a $1,500 fee.

Once trained in his ReCODE Protocol, medical professionals charge patients upward of $300 for a consultation and as much as $10,500 for eight- to 15-month treatment packages. For the ReCODE protocol, aimed at people already suffering from early-stage Alzheimer’s disease or mild cognitive decline, Apollo Health charges an initial $1,399 fee for a referral to a local practitioner that includes an assessment and extensive laboratory tests. Apollo then offers $75-per-month subscriptions that provide cognitive games and online support, and links to another company that offers dietary supplements for an additional $150 to $450 a month. Insurance generally covers little of these costs.

Apollo Health, founded in 1998 and headquartered in Burlingame, California, also offers a protocol geared toward those who have a family history of dementia or want to prevent cognitive decline.

Bredesen estimates that about 5,000 people have done the ReCODE program. The fees are a bargain, Bredesen said, if they slow decline enough to prevent someone from being placed in a nursing home, where yearly costs can climb past $100,000 annually.

Bredesen and his company are tapping into the desperation that has grown out of the failure of a decades-long scientific quest for effective Alzheimer’s treatments. Much of the research money in the field has narrowly focused on amyloid — the barnacle-like gunk that collects outside nerve cells and interferes with the brain’s signaling system — as the main culprits behind cognitive decline. Drugmakers have tried repeatedly, and thus far without much success, to invent a trillion-dollar anti-amyloid drug. There’s been less emphasis in the field on the lifestyle choices that Bredesen stresses.

“Amyloids sucked up all the air in the room,” said Dr. Lon Schneider, an Alzheimer’s researcher and a professor of psychiatry and behavioral sciences at the Keck School of Medicine at USC.

Growing evidence shows lifestyle changes help delay the progress of the mind-robbing disease. An exhaustive Lancet report in August identified a long list of risk factors for dementia, including excessive drinking, exposure to air pollution, obesity, loss of hearing, smoking, depression, lack of exercise and social isolation. Controlling these factors — which can be done on the cheap — could delay or even prevent up to 40% of dementia cases, according to the report.

Bredesen’s program involves all these practices, with personalized bells and whistles like intermittent fasting, meditation and supplements. Bredesen’s scientific peers question whether data supports his micromanaged approach over plain-vanilla healthy living.

Bredesen haspublished three papers showing positive results in many patients following his approach, but critics say he has fallen short of proving his method’s effectiveness.

The papers lack details on which protocol elements were followed, or the treatment duration, UCSF’s Hellmuth said. Nor do they explain how cognitive tests were conducted or evaluated, so it’s difficult to gauge whether improvements were due to the intervention, to chance variations in performance or an assortment of other variables, she said.

Bredesen shrugs off the criticism: “We want things to be in an open-access journal so everybody can read it. These are still peer-reviewed journals. So what’s the problem?”

Another problem raised about Bredesen’s enterprise is the lack of quality control, which he acknowledges. Apollo-trained “certified practitioners” can include everyone from nurses and dietitians to chiropractors and health coaches. Practitioners with varying degrees of training and competence can take his classes and hang out a shingle. That’s a painful fact for some who buy the package.

“I had the impression these practitioners were certified, but I realize they all had just taken a two-week course,” said a Virginia man who requested anonymity to protect his wife’s privacy. He said that he had spent more than $15,000 on tests and treatments for his ailing spouse and that six months into the program, earlier this year, she had failed to improve.

Bredesen said he and his staff were reviewing “who’s getting the best results and who’s getting the worst results,” and intended to cut poor performers out of the network. “We’ll make it so that you can only see the people getting the best results,” he said.

Colleagues say that to test whether Bredesen’s method works it needs to be subjected to a placebo-controlled study, the gold standard of medical research, in which half the participants get the treatment while the other half don’t.

In the absence of rigorous studies, said USC’s Schneider, a co-author of the Lancet report, “saying you can ‘end Alzheimer’s now and this is how you do it’ is overpromising and oversimplifying. And a lot of it is just common sense.”

Bredesen no longer says his method can end Alzheimer’s, despite the title of his book. Apollo Health’s website still makes that claim, however.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.