Facility welcomes patients with HD, teaming quality of care with quality of life
This article was recently shared on HD Caregivers. Leisure Chateau, located in NJ, should become a model for all HD facilities!

"Going beyond their own walls, Kelly Kunz, LPN, HD unit manager and Sunshyne Darcy, MS, CCC-SLP, speech pathologist have compiled their expertise and distilled it into an HD education program they take to other facilities and agencies. 'We want to make it available to other nurses," said Knowles commenting on the outreach. "Our whole purpose is to share our knowledge.'"

Accepting the Challenge

http://nursing.advanceweb.com/Archives/Article-Archives/Accepting-the-Challenge.aspx

Facility welcomes patients with Huntington's disease, teaming quality of care with quality of life
By Valerie Neff Newitt Posted on: November 2, 2010

That mythical knight on a white horse looked a little unusual to Chrissy Flynn of Medford, NJ, whose husband, Mark, has Huntington's disease (HD). Her rescuer on a galloping steed took the form of a long-term care facility, Leisure Chateau Care and Rehabilitation Center, Lakewood, NJ.

"Huntington's kidnapped my once intelligent, vibrant, fun-loving, handsome husband," recounted Flynn. Though the task of caring for Mark, 61, had grown in incalculable ways, Flynn admitted she "couldn't let go, until I just couldn't hang on any more." That's when she found what she terms heaven-sent help in the form of Leisure Chateau.

Mark, a former regional sales manager for a leading fiberglass manufacturer, "did not go willingly," recalled Flynn. "But within weeks, he was 'settled in,' happy, eating and getting good care . he has actually improved due to activities, restorative and speech therapies, and loving care . There are angels on earth, and they all work at Leisure Chateau."

Huntington's 101

To understand the immensity of caring for individuals with HD, you must grasp its challenges. Christine Hogan, MSW, LCSW, coordinator of the Huntington's Disease Clinic at University of Medicine and Dentistry of New Jersey (UMDNJ), Newark, offered a snapshot she calls "Huntington's 101."

"HD is a progressive, genetic, terminal illness. There are no cures and no remissions," said Hogan, all lightness gone from her tone. "It's a neuropsychiatric disease characterized by: uncontrolled movements (chorea), psychiatric disorders ranging anywhere from depression to obsessive compulsive disorder, hypersexuality, paranoia and delusions of grandeur, to psychosis and cognitive deficits. The disease affects a specific part of the brain, the basal ganglia, so there are certain mental functions that will be affected while others are not touched.

"Up until death," Hogan continued, "people with HD are aware of their environment. They are not in 'la-la land.' Yet dementia affects their executive functions - their ability to plan, to sequence things. Their processing speed becomes very slow and they eventually lose the ability to verbally communicate because of uncontrolled movements in their mouth and throat."

Another hallmark of HD: It generally strikes young adults in their 30s and 40s. Death typically occurs about 20 years following onset of symptoms, but there is no hard and fast timeframe.

Accepting the Challenge

With additional behavioral challenges accompanying HD, it is not surprising many long-term care facilities simply do not admit patients from this population. However, Leisure Chateau took on the challenge in 1998, and now has a 60-bed HD unit within its 242-bed capacity.

"Our first HD patient was a female in her 30s," recalled Kelly Kunz, LPN, HD unit manager. "When she first arrived she didn't have telltale physical movements that we could see, but she had psych-related issues.. We now know each person with HD is unique. But back then, none of us really knew what HD was. We had to research it. Our education department gave us as many inservices on HD as possible."

The education continued fast and furious when a second person with HD was admitted. "This gentleman was more advanced," said Kunz. "We saw involuntary flailing of extremities, facial ticks. It was a hands-on learning experience . with us implementing whatever safety precautions were needed.

"After two cases, the word got out," said Kunz of the unit's remarkable growth. "Many facilities are nervous when they hear Huntington's, whereas we remained open-minded and weren't afraid to take on the challenge."

Culture Change

"It was the dawn of a new age at Leisure Chateau," agreed Donna Knowles, MSN, BS, RN, director of nursing. "Before coming here in 2008, I had never been exposed to HD. As I took my first trip through the Huntington's unit, I was actually afraid. "Even after nursing for 25 years, I thought, 'I don't know if I can do this.' Residents were ambulating the hall with uncontrolled movements; I thought they were going to hit the floor, but then they'd regain balance and keep on walking," Knowles remembered. "Some residents wore helmets or hip protection just in case they did fall."

But then something happened to Knowles. "I saw the challenge, the need," she recalled. "Other nurses were able to do this. More than that, they embraced it. I wanted to try. Thirty-five patients with HD? That's a big undertaking. But our staff is here for the long haul."

As staff became more aware of the specifics of HD, they learned speech problems, too, are a hallmark of the disease. "It often starts with a delayed response rate and dysarthric, or slurred, speech," explained Sunshyne Darcy, MS, CCC-SLP, speech pathologist at the facility. "Problems worsen as time goes on. In the end-stages most with HD are non-verbal.

"HD is a hereditary disease; if your parent has it, you have a 50/50 chance of developing it," Darcy explained. "This fact leads to another traumatic aspect: Many of our residents were once involved in caring for a parent who had HD, so they understand the progression of the disease."

Knowles noted quality care for people with HD requires forethought. "They get frustrated and have temper tantrums. They need to have their needs met, right at that moment. So the best way to care for them is to anticipate their needs to avoid the anxiety and agitation."

Finding Quality of Life

Perhaps the optimal way to meet daily needs is to offer true quality of life. "Recreation is a big part in caring for these residents, younger by most LTC standards," said Kunz. "We formed a Huntington's group; they meet in their own room they call Paradise Island. This is not to segregate them, but rather to make them comfortable in their own skin, their own surroundings. Most 30 year olds don't want to play bingo every Wednesday, so they enjoy trivia or music suited to their age group. They love movies, video games, playing Wii . Oh, and they love to eat."

Weight gain is crucial to quality care in HD. "Patients need increased calories because of their constant movements," explained Kunz. "They are literally exercising all the time. When residents first come here they are often skin and bones. There is a big swallowing component, and families don't know how to manage that. Once here, we modify diets, teach feeding strategies. One resident recently came in at 96 pounds and now she's up to 112. Eating is huge.

"Quality of life generally is better here than at home for these patients," said Kunz. "They realize they are not the only ones with this diagnosis. They feel relief. They socialize with peers."

And that has even translated into committed relationships at Leisure Chateau. "You wouldn't expect to have to worry about birth control in long-term care, but that is a concern here," noted Knowles. "We have HD residents in the dating mix. One couple shares a room because they are committed in their relationship. We've hosted commitment ceremonies - white dress and veil, cake and reception."

Partners in Care

About 3 years ago, Leisure Chateau formed a collaborative partnership with UMDNJ, which is home to one of three NJ Huntington's clinics (the others are in Piscataway and Stratford) providing medical, psychological, genetic and social services to patients with HD and their families.

"The clinic comes right to Leisure Chateau," explained Kunz. "Every 3 months a neurologist, psychiatrist, geneticist and social worker evaluates patients." "This is a huge plus," added Knowles. "Families don't have to shuttle patients to specialists, which can be a big deal; because of patients' posture and movement, they are not easy to transport. They require special chairs that cannot be placed in an ambulance."

Hogan, clinic coordinator, called the collaboration ".a match made in heaven. Our doctors - a psychiatrist and a neurologist - get to see patients in their own environment. And they talk to nurses who go on rounds with them to every patient. There's always a lot of brainstorming between doctors and nurses. Nurses' input is vital. They're part of our team, discovering the best route for individual patients.

"It's a very exciting thing," said Hogan. "Working with this population at this facility results in many more successes than failures. The nurses at Leisure Chateau? We know them, we work with them, we eyeball them, we sit and laugh with them. We trust them. It's a very good relationship. And most important, patients feel supported."

HD Is Everyone's Business

Today, HD referrals to Leisure Chateau continue to climb. "The Huntington's Society of America got wind of us, many hospitals and caseworkers started referring . Columbia Presbyterian in NY refers a lot of patients. We're known," said Knowles. "We have been contacted via internet by families as far away as Texas and Florida."

Leisure Chateau staff is indeed on the cutting edge of HD awareness as new hires in every department from nursing to
housekeeping receive HD orientation and regular inservices.

Going beyond their own walls, Kunz and Darcy have compiled their expertise and distilled it into an HD education program they take to other facilities and agencies. "We want to make it available to other nurses," said Knowles commenting on the outreach. "Our whole purpose is to share our knowledge."
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Leisure Chateau Care & Rehabilitation Center
Huntington Speciality Services
http://www.leisurechateau.com/huntington-services.html
962 River Avenue
Lakewood, New Jersey 08701
Phone: 732.370.8600 / Fax: 732.370.8676
E-mail: admissions@leisurechateau.com<mailto:admissions@leisurechateau.com>