In sickness and health, Monica Seville has spent much of her marriage advocating for her husband, Gregory Seville, 62, who was diagnosed in 2005 with Huntington’s disease (HD).
Now the McConnellsburg, Pennsylvania, woman is trying to prevent her husband from being moved from a hospital 20 minutes from her house to a New Jersey long-term care facility four hours away—an eight-hour round trip. She has been told there is no long-term facility in all of Pennsylvania that will take him, and if she doesn’t agree to move him to New Jersey soon, the hospital threatens to seek guardianship so they can move him without her consent.
Huntington’s disease is genetic. Gregory’s father had it. The Sevilles have two adult daughters, one with HD.
Caused by the death of neurons in the brain, HD patients progressively lose control of movement, thoughts, and emotions. It often strikes in the 30s or 40s, robbing patients of their careers, aspirations, independence, and personality.
Adding to the emotional toll of living with a rare, ultimately fatal disorder, an estimated 41,000 HD patients in the United States and their families struggle to find facilities willing to accept them and to provide needed care.
“When you’re seeking placement for the person with Huntington’s they are younger than most long-term care facilities care to work with,” Dr. Arik Johnson, psychologist and chief mission officer of Huntington’s Disease Society of America (HDSA), told The Epoch Times. “They have behavioral issues, cognitive impairments that make them sometimes harder to work with, and because of movement conditions, this is a person who is a potential risk for falls, self-injury, or a potential risk to others. To a lot of long-term care facilities, this is not the ideal patient.”
Behavior Changes
Violent behavior is possible in HD patients because they can experience psychiatric symptoms like anger, and cognitive symptoms like disinhibition—a lack of restraint.For most people who might react angrily to a situation by considering throwing something or slamming a door, their cognitive brain quickly thinks it through and stops them from acting out. Someone with Huntington’s has frontal lobe impairments, Johnson said, so they might not be able to stop undesired behavior.
“It’s a mix of psychiatric and cognitive symptoms that can lead to people acting out being violent in some cases,” Johnson said, but he stressed that not every HD patient will be violent, and even within families, HD is experienced differently in individual patients.
In the years her husband lived at home, Monica Seville said it was like living with someone with a demon possession.
“He could be fine, and then would just snap and get this killer look in his eyes and it was just like a demon possession over him,” Seville said. “He never actually punched me. He shoved me to the ground several times and the verbal abuse was just horrific.”
Their daughters were subjected to his behavior, too. Huntington’s disease affects the entire family.
Once when she was at work, a drunk man kept driving past their house, located near a dead end.
“Greg had stepped out on the road, and the guy made the mistake of getting out of his vehicle and coming towards Greg. Well, Greg just about beat him to death. If a neighbor wouldn’t have intervened, he probably would have,” Seville said.
They went to court and he wasn’t held responsible because of the Huntington’s diagnosis, she said. But it was a very difficult situation and cost them thousands of dollars.
Placement Problems
Greg Seville’s mental health was declining in 2014 when he had a delusion for weeks that three women were coming to live with them. When they didn’t arrive, he took the car and went looking for them. He knocked on a neighbor’s door. The people who lived there called police when Greg insisted they had to leave so the three imagined women could live in their house.
“The police took him away and they said he was not allowed to come back home because that was too many times they’ve had to come back here and pick him up,” Seville said.
They took him to WellSpan Chambersburg Hospital where he stayed in the behavioral health unit for four months. The police gave her a letter saying he was not allowed back home.
“We finally got him into an assisted living facility in Shippensburg (Pennsylvania) that took him.”
He did well there, but it was all self-pay, and by 2017, Greg’s retirement money and a good chunk of the couple’s savings had run out. He was approved for Medicaid and moved to Shippensburg Rehabilitation and Health Care Center where he stayed until February 2022.
He became paranoid that the facility was trying to poison him.
“Anytime they came near him he would swing at them or kick at them,” Seville said. For unknown reasons, there were scratches all over his body. His health continued to decline, and the nursing home asked her if she wanted to put him in Hospice. She didn’t believe he was to that point, so she said no. They agreed to put him on “comfort care.”
Greg went for four days without eating and for reasons unknown to Seville, the nursing home moved her husband to the hospital.
“Somebody from the hospital actually called me and told me I should come over that night—that he didn’t think Greg would make it through the night. But he did, and a year later, he’s still with us.”
He has remained in the hospital for a year because the nursing home won’t take him back. The hospital has been trying to find a place for him.
1,200 Applications
South Mountain Restoration Center, operated through the Pennsylvania Department of Health, is equipped for HD patients, but it has told WellSpan there is a two-year waiting list. The Epoch Times asked the Department of Health what HD patients should do in such a situation, but the department has not provided an answer.Seville started getting pressure from WellSpan to move Greg to Leisure Chateau Care and Rehabilitation Center in Lakewood, New Jersey.
Seville, age 68, works full time, so an eight-hour round trip to visit her husband would mean seeing him far less.
Seeking Help From Lawmakers
As pressure to move Greg to New Jersey increased, Seville contacted her state senator, Doug Mastriano. Representatives from the hospital, Mastriano’s office, and a few other advocates from all sides met in August. The result was more time to search for placement.“We are still unable to find a facility for Mr. Seville. WellSpan has submitted applications to over 1,200 facilities in Pennsylvania, Maryland, New Jersey, New York, Ohio, and West Virginia,” WellSpan said in a letter to Seville on Sept. 20, 2022. “In addition, our case management staff has personally called many facilities to seek placement. Despite our efforts, Leisure Chateau Care and Rehabilitation center in New Jersey is the only facility potentially interested.”
The letter said WellSpan planned to move forward placing Greg at Leisure Chateau. “We hope you will partner with us in this process,” the letter said.
The move to New Jersey is in his best interest, WellSpan said in letter on Oct. 7, 2022, adding that before Greg is accepted, Leisure Chateau must evaluate him.
Seville’s consent is required for the evaluation. She does not consent.
The Epoch Times asked a representative at Leisure Chateau, which has a Huntington’s unit, how it is possible that it has consistently had space for an HD patient while no other facilities have openings. The representative has not responded.
The hospital has exhausted its efforts to seek placement in Pennsylvania. Leisure Chateau remains the only potential option, WellSpan said in a Jan. 27 letter.
“Unfortunately, you have repeatedly refused to give your approval, due to your concern about the distance of the facility from you in Pennsylvania and the impact Mr. Seville’s care at Leisure Chateau will have on your finances,” the hospital said. “We kindly seek your cooperation and ask you to consider allowing Leisure Chateau to assess your husband to help us determine the next steps. If you are still unwilling to cooperate with us in this endeavor, WellSpan will need to begin pursuing guardianship for Mr. Seville.”
If the hospital gets guardianship, it can send him anywhere.
In a statement to The Epoch Times, WellSpan said it is committed to ensuring its patients are cared for in the most appropriate setting for their individual needs.
“At times, that includes transferring patients to a different facility that may specialize in a very specific type of care, while also trying to take into account convenience in location for family or friends that may wish to visit their loved one,” the health system said.
Tomorrow’s Patients Are Watching
Because one of the Sevilles’ daughters also has the Huntington’s gene, today’s placement problems are only the beginning. The hope is that more options will be available for future patients.Mastriano is searching for solutions to these kinds of problems that could lead to future legislation, his office told The Epoch Times.
The HD community suggests more funding.
“Placement of loved ones is one of the most consistent issues we hear about at HDSA,” Johnson said.
States determine how much reimbursement long-term care facilities get. Increasing the amount facilities get for serving the HD population may bring more facilities to the table and help them fund additional staff an HD patient may need.
In New York, legislation in the last decade increased funding for facilities accepting patients with neurodegenerative conditions, HD and ALS specifically, Johnson said.
Often families must educate people, including those in health care, about Huntington’s disease, and HDSA sometimes trains facility staff on how to work with HD patients.
Long-term care facilities don’t have to have an HD wing to care for these patients, Johnson said.
“There are many places that have taken in a resident who has Huntington’s and learned how to care for them,” Johnson said. “We recognize it is a family disease, and we recognize as an organization, and just as human beings, how important it is for people who are living with HD to know that their loved ones will be cared for, and we know how hard it is for people to find those kinds of places.”
