Tagged Natural Disasters

Chaos And Agitation: Helping A Patient Survive A Hurricane

As Hurricane Florence barreled toward her coastal community, Patty Younts grappled with a question: Where should a person with dementia go?

Her husband, Howard, 66, suffers from a type of dementia called posterior cortical atrophy, which has robbed him of short-term memory and made him almost blind. Their home on Pawley Island in South Carolina, where they have lived for more than 30 years, lay in a mandatory evacuation zone. Staying could mean exposing themselves to raging winds and a storm surge. But leaving would mean upending the familiar routines and sense of security that her husband relies on.

Patty, 65, who is her husband’s sole caretaker, decided to take him to higher ground. They spent one night in a hotel in Columbia, S.C., before fleeing inland for Greenville. Patty said her husband, a former golf course superintendent, has always been good-natured and calm. But even eating in a restaurant has become stressful — his vision has deteriorated so badly that he can’t see the food he’s eating. Last Thursday, as he adjusted to a second hotel, his anxiety and stress turned into a “complete meltdown.”

For the first time in their 32-year marriage, Patty said, her husband grew very suspicious. He began accusing her of stealing food, and he threatened to call the police.

“It broke my heart. That’s not him,” she said.

For the more than 5 million people in the U.S. who live with dementia — a set of terminal diseases leading to memory loss, cognitive decline and personality changes — natural disasters can be particularly terrifying. No matter whether they evacuate or stay put, storms can bring added confusion, disorientation, anxiety and paranoia.

“People with dementia function best when they are in their usual environment and their usual routine,” said Ruth Drew, director of information and support services at the Alzheimer’s Association, which has posted guidelines for families dealing with disasters. “When there’s a lot of chaos and hubbub, when people are rushing around and tense, that can be very overstimulating and anxiety-provoking,” she said.

When people with dementia “feel anxious, rushed and hurried, often they shut down. They have a harder time cooperating with a person,” Drew said. They respond to that anxiety in various ways — crying, arguing, fighting, wandering or walking away.

Earline “Candy” Moore, 75, who has vascular dementia, did not want to leave her home of 40 years when Hurricane Florence threatened her neighborhood.(Courtesy of Tina Paxton)

On the southern coast of North Carolina, Tina Paxton, wrestled with how to quell her mother’s anxiety. Earline “Candy” Moore, 75, who has vascular dementia, did not want to leave her home of 40 years, her trusty dogs or her kitten, Destiny. But the storm was set to make landfall not far from the cottage they share outside Calabash.

Paxton, 55, is her mother’s sole caretaker. She said she could not afford the upfront cost of leaving the storm’s path — gas, hotels, possibly getting stranded and missing work at her subscription management company.

She considered relocating to an emergency shelter at a local high school but decided the crowds would ramp up her mother’s anxiety. “Everybody talking, the echoes, the noise — it would’ve been a nightmare, for her and for me,” Paxton said.

Instead, last Thursday she loaded her mother and their three dogs into a compact Kia Optima and headed to a brick church about 10 miles away, where a pastor had invited a half-dozen people to take shelter. They spent two days there, listening to wind that “sounded like a locomotive” as the storm ravaged the state.

As they hunkered down inside the Lighthouse of Prayer church, Moore, whose dementia has prompted confusion, forgetfulness and hallucinations, kept asking where the hurricane was.

“She kept forgetting that the eye of the hurricane was aimed at us,” Paxton said. Every time someone reminded Moore of that fact, she would relive the shock and fear, “like it was all starting over again.”

Gary Joseph LeBlanc, a dementia care educator in Florida, said he received many calls last year during Hurricane Irma from shelters asking for help because people with dementia were having anxiety attacks, being combative, yelling and screaming.

“They didn’t know how to handle these people,” he said.

Dementia patients need to be treated with care, not shuffled around, he added. “By the time you get them to the hospital, they’re going to be worse. The hospitals don’t want them. All they’re going to do is overmedicate them.”

If possible, family members should also keep them out of shelters. “There’s nothing in that building but anxiety,” he said.

LeBlanc spent 20 years caring for his parents, who both had dementia. He said the time he spent without power during 2004’s Hurricane Frances was “the longest three weeks of my life.”

Gary Joseph LeBlanc cared for his father, Joseph LeBlanc (at left in photo dated 2005), who had dementia, during several major storms in Florida.(Courtesy of Gary Joseph LeBlanc)

“My dad was just going nuts. He kept opening the refrigerator, going, ‘Why is that light out? We gotta fix that light!’” recalled LeBlanc, of Spring Hill, Fla.

While the power was out, his father would go to bed, lie down for 10 minutes, realize it was too hot to sleep, come downstairs, then forget what had happened and repeat that pattern over and over.

“He couldn’t understand why he couldn’t turn the TV on. It was all confusion,” LeBlanc said. “He was screaming, he was yelling, he was mad. He didn’t understand what was happening.”

LeBlanc said he did his best to stay calm. “You’ve got a whole nother situation on your hands when you’ve got someone with dementia,” he said. “They’re going to feed off of your emotions — if you get upset, they’re going to get upset.”

In North Carolina, Paxton returned home Saturday after a harrowing drive that involved charging through a foot of running water because there was no other route and she couldn’t go back to the church. Back home, they were relieved to see their house survived the storm undamaged. Moore walked inside, found her kitten — and settled in quickly, happy to be home.

But for people with dementia, recovering from a natural disaster can take extra time, LeBlanc said.

“Even after we got the power back, there was another week of getting back to normal,” he recalled of his time with his father. “It was slow progress, trying to get him back to his routine.”

Since they returned home on Saturday, Patty Younts said, her husband has experienced heightened confusion.

“It seems like he has been even more lost in his own home than before he left,” she said. “He cannot find where the bathroom is. I have to take him every time to show him, get him lined up in front of the toilet.”

For caregivers who evacuated and have not yet returned, LeBlanc recommends checking out the damage first before going home with a loved one who has dementia.

“You really don’t want to bring them back home and see the disaster,” he said. “The less trauma we put them through, the better they’ll be.”


KHN’s coverage of these topics is supported by
Gordon and Betty Moore Foundation
and
John A. Hartford Foundation

Podcast: KHN’s ‘What The Health?’ A Detour On A Smoking Off-Ramp

The Food and Drug Administration declared Wednesday that vaping among teenagers has reached “an epidemic proportion.” The agency told five major e-cigarette manufacturers that they had 60 days to find ways to keep their products away from minors.

“I use the word epidemic with great care,” FDA Commissioner Scott Gottlieb said in a Wednesday news release. “E-cigs have become an almost ubiquitous — and dangerous — trend among teens.” Yet, as the panel discusses, health advocates warned that the actions may not be strong enough.

This week’s panelists are Sarah Jane Tribble of Kaiser Health News, Stephanie Armour of The Wall Street Journal, Kimberly Leonard of the Washington Examiner and Rebecca Adams of CQ Roll Call.

They also look at Arkansas’ announcement that more than 4,000 Medicaid enrollees will be suspended for not meeting new work requirements, the Census Bureau’s announcement that the nation’s uninsured rate was unchanged last year, legislation under consideration on Capitol Hill that will affect the Affordable Care Act and efforts to stem the opioid epidemic.

Among the takeaways from this week’s podcast:

  • The FDA’s announcement on e-cigarettes appears to be a turning point on officials’ views of how to handle the issue. It was spurred by reports of dramatic growth in teen vaping. Sen. Dick Durbin (D-Ill.) recently reported that teen use has increased by 75 percent in the past year.
  • The e-cigarette industry is largely unregulated. Many brands offer a variety of sweet flavors, even though makers of traditional cigarettes are prohibited from doing that.
  • Arkansas’ move to cut adults from the Medicaid expansion program the state rolled out under the ACA is likely to be challenged in court.
  • The Trump administration has been a strong supporter of work requirements in the Medicaid program and Seema Verma, who heads the Centers for Medicare & Medicaid Services, tweeted Wednesday night after the Arkansas announcement that she was excited about the work Arkansas has done to connect beneficiaries to jobs and education.
  • The Census Bureau’s report Wednesday is the first time since the implementation of ACA coverage expansions that the national uninsured rate did not fall.
  • The Republican-led House is expected to vote soon on a package of bills that will remove or postpone more taxes in the ACA, including the penalty for employers who do not offer coverage for workers and a tax on tanning salons. It is doubtful, however, that the measure will get through the Senate this year.

Plus, for extra credit, the panelists recommend their favorite health stories of the week they think you should read, too:

Sarah Jane Tribble: Bloomberg News’ “The Secret Drug Pricing System Middlemen Use to Rake in Millions,” by Robert Langreth, David Ingold and Jackie Gu

Kimberly Leonard: Harper’s Magazine’s “Can Hospitals Learn to Better Treat Deaf Patients?” by Katie Booth

Rebecca Adams: The New York Times and ProPublica’s “Top Cancer Researcher Fails to Disclose Corporate Financial Ties in Major Research Journals,” by Charles Ornstein and Katie Thomas

Stephanie Armour: The Financial Times’ “Opioid Billionaire Granted Patent for Addiction Treatment,” by David Crow

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Trying To Protect Seniors, The Most Vulnerable, From Formidable Foe Florence

Perhaps no other population is as vulnerable during a hurricane as frail, older adults, especially those who are homebound or living in nursing homes. With Hurricane Florence predicted to slam the North Carolina coast Friday, health officials are already scrambling to keep older residents safe.

Seniors “are not only the most likely to die in hurricanes, but in wildfires and other disasters,” said Dr. Karen DeSalvo, a New Orleans native who served as health commissioner in that city after Hurricane Katrina and went on to be named acting assistant secretary for health at the Department of Health and Human Services for the Obama administration. “The seniors always seem to bear a big brunt of the storms.”

Older people may have a harder time evacuating because they don’t have their own cars or are homebound, said Lauren Sauer, director of operations at the Johns Hopkins Office of Critical Event Preparedness and Response in Baltimore.

During Hurricane Katrina, an analysis of 986 Louisiana residents who died showed the mean age of victims was 69 and nearly two-thirds were older than 65, DeSalvo said. The dead included 70 people who died in nursing facilities during the storm or just after the storm made landfall.

And last year, 12 residents overheated and died at a facility in Hollywood Hills, Fla., in the immediate aftermath of Hurricane Irma, which knocked out the facility’s air conditioning and the temperature climbed to over 95 degrees. The tragedy led Florida to pass legislation requiring nursing homes and assisted living facilities to have backup generators capable of keeping residents cool.

“Unfortunately, the best wake-up call is when a tragedy occurs,” said Dara Lieberman, senior government relations manager at the Trust for America’s Health, a nonprofit. “Hopefully, nursing facilities and emergency managers paid attention to the loss of life in the long-term care facility in Florida last year and realize the risks they face by not preparing. Every facility should have a plan.”

Some studies suggest communities aren’t much better prepared than in the past, however.

A 2018 study from the National Academy of Sciences found that “we are only marginally more prepared to evacuate vulnerable populations now than we were during Hurricane Katrina,” Sauer said.

Deciding whether to stay or go can be more complicated than it sounds, said J.T. Clark of the Near Southwest Preparedness Alliance, a coalition of hospitals and other public health services in southwestern Virginia.

“There is a risk of moving people and there is a risk of staying in place, and you have to weigh those risks,” Clark said.

Evacuations pose a number of dangers for fragile patients, some of whom may need oxygen or intravenous medications, said Sauer. She pointed to a 2017 study that found a sharp increase in mortality among nursing home residents who evacuated because of an emergency, compared with those who sheltered in place.

She noted that leaving a facility is only part of the challenge; it can be equally difficult to find a safe place prepared to house evacuated nursing home residents for days at a time, she said. Clark said that nursing homes once commonly assumed they could simply transfer their residents to local hospitals. But that can impair a hospital’s ability to care for people who need emergency and urgent care, he said.

Many nursing homes in the Carolinas are evacuating residents to areas outside the storm’s direct path.

South Carolina had evacuated 32 nursing homes and assisted-living facilities by Wednesday afternoon, said Randy Lee, president of the South Carolina Health Care Association.

On the Outer Banks of North Carolina, Sentara Healthcare evacuated 65 residents from a nursing home in Currituck to the company’s medical centers in Hampton Roads, Va., spokesman Dale Gauding said.

Source: Centers for Medicare & Medicaid Services, National Weather Service(Caitlin Hillyard/KHN and Lydia Zuraw/KHN)

Hurricane Florence poses risks beyond the coasts, however. Sentara also moved five intensive care patients out of a medical center on the Pasquotank River in Elizabeth City, N.C., because of the risk of flooding. Those patients also went to hospitals in Hampton Roads, Gauding said.

With Norfolk, Va., now expected to escape the brunt of the storm, the 88 residents at the Sentara Nursing Center there are sheltering in place, Gauding said.

Nursing homes in Charleston, S.C., complied with mandatory evacuation orders, said Kimberly Borts, director of communications and charitable giving for Bishop Gadsden retirement community on Charleston’s James Island.

She said the facility conducts annual evacuation drills to continually improve its capability to safely relocate residents and coordinate with the company that provides ambulances.

However, Hurricane Florence’s expected landfall caused a slight change in evacuation plans, which were to be completed by Monday, Borts said. The evacuation had to be delayed until Tuesday because the ambulances were diverted to Myrtle Beach, which remained in Hurricane Florence’s sights.

As of Wednesday afternoon, New Hanover Regional Medical Center in Wilmington, N.C., was directly in the storm’s path. But hospital officials view the building as strong enough to withstand the storm, said spokeswoman Carolyn Fisher. They were less confident about a building housing a skilled nursing facility in Pender County, N.C., whose residents are being moved away from the hurricane’s projected course.

Senior citizens who live at home are also at risk, especially if they lose electricity.

More than 2.5 million Medicare recipients — including 204,000 people in Virginia, North Carolina and South Carolina — rely on home ventilators, oxygen concentrators, intravenous infusion pumps and other electrically powered devices, according to the Centers for Medicare & Medicaid Services. The agency has created a tool called emPOWER 3.0 to help states check up on them.

Patients who lose electricity may need to go to their local emergency room to power their medical equipment, said Mary Blunt, senior vice president at Sentara Healthcare in Norfolk, Va., and interim president of Sentara Norfolk General Hospital. Patients with kidney failure also may need to receive dialysis at the ER if their regular dialysis center is closed, she said.

Virginia, North Carolina and South Carolina will open emergency shelters for people with special medical needs. These facilities provide “limited support,” but not medical care, for people with special needs, according to the South Carolina Emergency Management Division. Residents must bring an adult caregiver to remain with them at all times, according to the South Carolina agency.

Residents should register for these shelters in advance, said DeSalvo, who said that getting people to go can be difficult.

“People do not want to leave their homes,” she said.

Bert Kilpatrick said she’s not concerned about Hurricane Florence and was planning to stay in her house on Charleston’s James Island, where she is just a stone’s throw from the Stono River, a huge tidal estuary that runs to the Atlantic Ocean.

“I’ve been here since 1949. I’m used to these hurricanes,” the 87-year-old said. “Me and my cat, Maybank, we’re staying.”

She even stayed during Hugo, a giant, Category 4 hurricane that devastated Charleston in September 1989. She worked at a downtown hospital then and was there when the storm hit; but her husband, who died recently, rode out Hugo in the house, which was undamaged except for one broken storm window.

Kilpatrick said that as far as she knows all of her nearby neighbors also were staying put. One of those, Patsy Cather, 75, said she and her husband, Joe, were planning to remain. “I’m staying here because he won’t leave.”

She said they might decide to leave later if the storm reports look worse for Charleston. “It’s a no-win situation. You leave, you stay safe; but your home may be gone.”

Databases and registries can help with another challenge: the aftermath of the storm.

“When the wind passes and the water starts going down, they really need to mine the data: Who has ambulatory challenges? Who’s on chemotherapy? Who’s got an opioid dependency?” DeSalvo said.

DeSalvo said she believes the states in the path of Hurricane Florence are in good hands.

“I think the good news is, for a state like South Carolina or North Carolina, they have strong, seasoned leadership in place who are capable of not only managing a complex logistical challenge, but who are good humans,” she said. “It takes both.”


KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.