Courtesy of Gail Ward

Steve Ward, shown here with one of his pets, died at age 60 of end-stage Alzheimer's disease. Reports prepared for Gov. Tim Kaine and the General Assembly in 2006 and 2007 said that on any given day, regional and local jails in Virginia care for 60 percent of the state's mentally ill people.

Kyle Green | The Roanoke Times

Gail Ward, standing in front of a photo collection of her husband, says Steven Ward was diagnosed with Alzheimer's disease at the young age of 56, and she had to struggle to find appropriate care for him. Steve died in November.

It's not just the absence of Steven Ward that his widow, Gail, has struggled with since his death nine months ago. It wasn't even his diagnosis of Alzheimer's disease -- at the shockingly young age of 56.

Gail Ward, 58, has been a long-term care nurse for decades and knows the struggles of caring for demented patients well.

No, the memory that haunts the Roanoke woman is of her fearful, confused husband being escorted into an emergency commitment hearing -- in handcuffs and shackles -- and pleading with her to tell him: "What did I do wrong?"

He did nothing wrong -- intentionally -- but his behavior proved to be a challenge for the area's medical and legal systems. It's a story that will not go away with Steve Ward's passing, not with 6 million baby boomers shuffling toward retirement.

In the Roanoke region alone, a projected 13,666 people will have Alzheimer's by 2030. At least half will at some point display the kind of violent behavior Steve Ward showed the night he was hauled away by police from his room at The Court, an assisted living facility for Alzheimer's patients in Roanoke.

Gail Ward worries: If a veteran long-term care nurse can't navigate the medical, financial and legal maze laid out before caregivers of people with Alzheimer's, how will the rest of us manage?

'Reverse-aging'

Not every patient with Alzheimer's will get violent, although studies show that 50 percent to 70 percent will show various degrees of agitation at some point in the course of their disease. The younger the patient, the more progressive the disease and the more fraught with complications.

Steve was in his mid-50s when Gail first noticed something wrong. He'd put the city sticker on his car upside down. He'd arrive home from a night out playing darts and sleep in the car, having forgotten to come inside the house.

Eventually, he was fired from his job at an automotive-parts store because he delivered parts to the wrong places and showed up for work late -- because he'd gotten lost.

At 56, he was diagnosed with early-onset Alzheimer's, a relatively rare form of the disease, with only 5 percent to 10 percent of all patients developing symptoms before the age of 65.

In the beginning, Steve slept while Gail worked the graveyard shift. The childless couple lived in the Hurt community of Pittsylvania County, where Steve was known as a soft touch, a sucker for taking in stray cats and dogs. He fed his menagerie and cleaned the house -- until it became clear in early 2007 that he could no longer be left alone.

"He was reverse-aging right before my eyes," Gail recalled. First, he was a teenager, losing the car keys -- because he'd put them in the freezer. Then, he was a toddler, standing in the shower with his clothes on and the water running -- in the bathroom sink.

Gail thought she'd found solace when she moved to Roanoke to be closer to family and to admit Steve to The Court, a 56-bed, private-pay memory-care facility on Persinger Road. She borrowed money from her sister to help pay the $4,000 monthly fee.

On Thanksgiving night 2007, she got a call: Steve had become combative, hitting a staff member. When police were called to the scene, he bit an officer.

Police transported him to the emergency room at Carilion Roanoke Memorial Hospital in shackles and handcuffs.

When Gail's family arrived at the hospital, they found him handcuffed to a bed in a cubicle with a privacy curtain; an emergency custody order had been issued.

Not enough beds

The admission bracelet on his wrist described him as an "UNKNOWN WHITE MALE" because his records were somehow lost during his transfer from The Court, the family said. (Kelli Ramsey, executive director of The Court, said she couldn't comment on Ward for this story, citing privacy rules.)

He remained in the psychiatric annex of the emergency room while social workers searched for an available psychiatric bed in the region.

For three days, there weren't any.

"Everyone else [in the psychiatric annex of the ER] was a psychotic patient with a longtime mental illness," recalled Gail's sister, Pam West. "At one point they were even talking about putting him in jail. I said, 'Hell, no, he can't go to jail.' "

By the end of the holiday weekend, an open bed was found at Catawba Hospital, the Roanoke region's state mental hospital. Steve stayed there for three weeks, until his condition stabilized and he was returned to The Court.

The family would endure the scenario twice more before Steve's death in November 2008. Once, the cause of his aggression turned out not to be dementia but rather a routine urinary tract infection that had gone undetected.

And yet the process was still the same: the handcuffed police transfer to the ER, the desperate search for a temporary psychiatric bed, the commitment order hearing and, finally, the quest for a long-term facility with an open bed.

The Court refused to let him return after the second episode. According to The Court's medical file on Steve, he was "hitting others, kicking, agitated and aggressively walking a fast pace through the community."

After a two-month stay in Roanoke Memorial's psychiatric rehab unit, he was placed at Raleigh Court Healthcare Center, where he died of end-stage Alzheimer's with his wife by his side. He was 60 years old.

"So many places didn't want him either because of his history, or they said they didn't have the room," Gail Ward recalled. "It was like he was a felon."

Lagging systems

Legal and medical protocols have not developed quickly enough to keep up with the rise in Alzheimer's, according to Robert Butler, the Pulitzer Prize-winning gerontologist who runs the International Longevity Center, a think tank on aging policy and research.

"The fact is, none of our institutions have caught up yet," Butler said in a recent interview. "We've got to succeed in finding better ways for treating these people, because soon we're going to have millions like them just around the corner."

According to reports prepared for the governor and the Virginia General Assembly in 2006 and 2007, nearly 400 older adults are on waiting lists for mental health services across the state. On any given day, regional and local jails in Virginia care for 60 percent of the state's mentally ill people, more than state and licensed hospitals combined.

"Licensed hospitals are reluctant to accept older Virginians with aggressive dementia because of discharge problems," reported the Joint Legislative Audit and Review Commission. "Older Virginians with behavior problems often remain in hospital beds long after inpatient treatment is no longer needed."

Renita Meredith and her sister Gloria Hylton of Christiansburg know the scenario well. Their mother, Elsie Alderman, was hospitalized in 2007 for six days while the pair searched the region for a Medicaid-approved nursing-home bed, finally landing on one in the 38-bed dementia unit at the Friendship Health and Rehab Center in Roanoke.

The assisted-living facility she'd been living in would not take her back, they said, because her money had run out and it didn't accept Medicaid. Her agitation had also worsened beyond their ability to manage it.

"For a while, we thought we were going to have to take her back home," Meredith said, adding that her own medical problems prevent her from lifting her mother.

Ideally, facilities should have consistent and well-trained staff members who can prevent such behaviors from escalating to violence, said Diane Kelly of Mental Health America of Roanoke Valley. But there will always be a need to transport violent patients to institutions -- for their safety and the safety of fellow residents.

Mental Health America will lobby the Virginia General Assembly next year for a change in law that would leave the matter of transporting patients with mental illness in handcuffs and shackles up to the discretion of the police officer at the scene, Kelly said.

"The criminalization aspect is what troubles families the most," said Gail Burruss, director of adult clinical services for Blue Ridge Behavioral Healthcare, the agency that provides community-based mental health care to the Roanoke Valley.

"Here you've got someone with a serious brain disorder, and they're essentially being criminalized because we don't have better resources to manage their behavior," Burruss said of Steve Ward.

Catawba Hospital, which reserves 60 of its 110 beds for geriatric patients, is always at or near capacity, according to chief nurse executive Vicky Fisher. The hospital actually has 40 more beds -- but lacks the state funding to open them up. "The facilities just don't exist in the numbers that we need them," Fisher said.

"Most of the time, a patient's stay here is lengthened because we simply can't find an appropriate facility that's taking anyone."

That's when the backlog spirals: Patients remain at Catawba, which means there are no beds available there -- which means that other patients linger in emergency rooms waiting for a bed at Catawba to open up.

"The ERs get clogged up with people who really just needed to be managed better and medicated at the facility," said Kathy Wolford, practice manager for the Carilion Center for Healthy Aging.

Years ago, Wolford's own grandmother was similarly shipped to the ER after she misinterpreted a conversation, grew agitated and threw coffee in her doctor's face. When she returned to the facility, Wolford found her drugged beyond recognition and strapped into a wheelchair with her teeth missing.

"I wreaked havoc in this facility," Wolford recalled. While chemical and physical restraints are no longer allowed in facilities, "you have to know how to be an advocate, and you have to be involved, alert to their types of behaviors, aware of their medications."

A quiet burden

Gail Ward knows that every family dealing with Alzheimer's has at least one horror story to tell. By sharing hers, she hopes more attention will be paid to improving treatment of patients and their families -- better protocols, better psychiatric management, more open beds -- before she finds herself submerged in caregiver hell again.

She's in the process of buying a home closer to her elderly parents so she can keep an eye on them. Her father takes medicine for memory impairment.

With a family history of Alzheimer's, she knows she stands an increased risk of getting the disease. "I'm checking on long-term care insurance right now," she said.

She couldn't afford the insurance while Steve was sick. She had to borrow money to pay for his care because it took three tries -- and a phone call from U.S. Rep. Bob Goodlatte's office -- before Medicaid approved his application, her family said.

If she looks a little exhausted after her graveyard shift at the Veterans Affairs Medical Center in Salem, well, she is.

Area advocates for the elderly applaud her for shining a light on a situation that too few people understand -- until they find themselves in the middle of it.

"Usually when an Alzheimer's patient dies, the family members don't want to talk about it because it was such a nightmare," said Margie Shaver, a former Alzheimer's caregiver and a member of the local Alzheimer's Association board.

"That's part of the problem, and I understand how they feel. When it's over with, you just want some relief."