Dementia: Falling through the cracks

Western Kentucky lacks resources for patients with most severe cases

Part one of a two-part series

By Nick Tabor, New Era Senior Staff Writer

Roughly eight years ago, Stephanie Gamblin was driving her father to the coal mine where he had worked for 20 years. She asked him to navigate.

It unsettled her when Hunt said he didn’t know the route.

The family had noticed other signs of his memory decaying. Though he’d always been a handyman, for instance, it seemed to take him forever to finish tiling a cabinet for Brenda Hunt, his wife and Gamblin’s mother.

A doctor’s visit confirmed their fear: He had Alzheimer’s disease.

He stayed at home until 2010, when the family decided he needed full-time nursing care and sent him to Tradewater Health and Rehabilitation Center. Its location was ideal — a short drive for Brenda Hunt — but it soon seemed Tradewater was ill-equipped for dealing with his illness.

 

Hunt wandered the halls, searching for his father. It didn’t benefit anyone when staff members told him his father had died many years before, Gamblin said. She gave him a picture of his dad to keep in his room.

Another day they tried to make him understand he wasn’t back in the coal mines. His family had to come calm him down.

She learned her father was starting conflicts with other residents, based on misunderstandings. He might have shoved someone, she said.

But the staff caught Gamblin off guard when they insisted on taking him to Trover Regional Medical Center in Madisonville. At the emergency room, someone from the nursing home’s corporate office served the family with discharge papers.

Brenda Hunt said she refused to sign, but the nursing home wouldn’t take Hunt back.

“So there we were, stuck in the hospital, with no place to go,” Gamblin said.

Trover’s ethics coordinator agreed to get Hunt a bed, though he didn’t have a medical problem. There his condition worsened.

“It was just absolutely traumatic to him,” Gamblin said.

Brenda Hunt said he hit her on the lip — something he’d never done in their 50-year marriage. Hospital staff had to keep him in restraints.

Eventually they sent him to a facility in Prestonsburg that specialized in helping dementia patients. But separated from his family by more than five hours, in an unfamiliar place, he stopped eating and lost his ability to talk. After only 14 days, the family moved him to a hospice in Henderson.

He died in August at the age of 70.

The family’s experience underscores a dire problem in Western Kentucky’s social services: The region lacks a facility designed for the most severe dementia patients, particularly those with violent histories.

And because the population is aging, the need becomes greater every year.

Feeling trapped

Imagine that you’re 80 years old and living in a nursing home. You’ve received Social Security checks for 15 years, but now your family is using the money to pay your nursing home bills.

Imagine that you have dementia and don’t know where the money is going. You decide the nursing home staff are stealing from you.

Or imagine that you think you’re a child in your parents’ house. You wander the halls of your nursing home and take a book from your neighbor’s room. When he tries to take it back, you think he’s your brother and swing at him.

Even worse, imagine you can no longer control your bowels. Nursing home workers need to change your clothes immediately, to make sure your fragile skin doesn’t develop sores.

Two nurses — strangers — try to pull you out of your chair and take off your pants. You attack them in self-defense, but more strangers come and pin you down.

Dr. Susan Vaught, director of psychology at Western State Hospital, provided these examples from her experience with dementia patients. They’re disastrous for nursing staff as well as patients, and local nursing home directors can tell similar stories.

Anita Gilbert, social services director at Christian Health Center, said her facility knows a dementia case is severe when the patient starts hitting staff, cursing or refusing medication. Patients have the right to refuse drugs, but they often become too hard to control after their drugs wear off, she said.

At another nursing home where she worked years ago, she suffered a broken arm and a black eye from dementia patients, and once someone tried to choke her.

Dementia-related outbreaks have caused no injuries in her five years at Christian Health Center, but it’s partially because there are now facilities in Tennessee that can usually accept the worst patients until they get stabilized.

Last resorts

Jennie Stuart Medical Center and Trover don’t have geriatric psychiatric wards. But as with Hunt, Vaught has seen families or nursing homes bring patients to the emergency rooms at these hospitals, then refuse to take the patients back afterward.

Keeping them in hospital beds ends up costing huge amounts of tax money, and it’s often uncomfortable for both the hospital staff and the patient, Vaught said.

Western State occasionally treats dementia patients, but only when they meet four criteria: They must pose a threat to themselves or others; it must result from mental illness; there must be a reasonable chance Western State can successfully treat the illness; and Western State must be the least restrictive place they could go.

Usually nursing home patients who get combative fall short on two or three of these criteria, Vaught said.

Further, Western State isn’t a long-term care facility — the average stay there lasts 19 days — and it’s not uniquely outfitted for patients with dementia.

When dementia patients do end up at Western State, the hospital sometimes confronts the same problem as Jennie Stuart and Trover: After a patients’ treatment, the original nursing home won’t take them back. Nursing homes have no legal obligation to do so, Vaught said.

Most often these patients end up at Western State’s nursing home.

The New Era reported in June that in 2010, Western State Nursing Home gave sedatives to 60.4 percent of its residents who didn’t have psychosis or a related disease. This was the highest rate in the area — compared to a national median of 16.7 percent.

Vaught said its saturation of dementia patients helps explain this. The data didn’t count most dementia patients as psychotic, even if they had schizophrenia or a similar disease, because their dementia diagnoses usually eclipsed other categories, Vaught said.

Some critics claim nursing homes drug their patients up to make them sleepy and docile — to make their jobs easier, or to employ fewer nurses and increase their profit margins.

But sometimes it would be inhumane not to give patients medications, Vaught said. The drugs also help keep facilities safe and secure.

And even Western State Nursing Facility limits whom it accepts. For instance, it turns away many patients with violent histories, Vaught said.

In a way, this leaves the patients who need help most severely with no place to go.