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"Eden" Transforming Long Term Care in CNY
By Joyce Gramza
Syracuse, NY – On the sixth floor of Loretto's Cunningham skilled nursing facility in Syracuse, 92-year-old Ben Harkola scoots his feet to wheel himself, and his wife, 88-year-old Margaret, toward the dining room.
"He don't have to," says Margaret Harkola. "I can pump my way wherever the hell I'm going. But he likes to, so, he's a perfect gentleman-- most of the time."
"Most of the time," Ben Harkola laughs, "that would be all of the time!" They laugh.
The Harkolas have been together for 65 years. After a bout with pneumonia sent Margaret to the ninth floor, Ben had a series of falls that brought him to the sixth floor. Then Ben started failing mentally, until he got back his room-mate-- and bed-mate.
"There was twin beds in here," his wife says. "And we threw them out and now we're sorry because this bed is very small."
The couple couldn't sleep apart and insisted on trying to share a twin bed, but one of them kept falling out.
So the staff came up with a regular double bed while a nephew arranges delivery of a queen-sized one.
Margaret, who describes herself as a "people person," says she's made a lot of friends here. Ben, who says he's less outgoing ("I let her do all the talking"), agrees.
The couple has shared sad times, too, outliving three of their four children.
"God gave them to me for a while, I guess," Margaret says. "He lent them to me... and they're there waiting for all of us to come. One day."
Odds are, they'll be coming from here. And like most of their fellow residents, the Harkolas didn't plan on coming and didn't plan to stay.
"It is God's waiting room," says Loretto administrator Lisa Maxwell. "That's where nursing homes are But we can still have people living wonderful lives while they're here."
Maxwell says the idea that old folks are people who are worthy of wonderful lives may seem obvious, but it's actually transforming the long term care industry.
In the Cunningham's auditorium, a class of Loretto employees, from nurses' aides to managers, gets a mandatory three days of training in what's called the "Eden Alternative."
Amid laughter, skits and role-playing, these so-called "care partners" examine the way things are in their work place, and imagine how they should be.
In one session, instructor Karen Carroll seats a trainee in a wheelchair, then takes the class through a brief review.
"What are the three plagues?" Carroll quizzes.
The class calls out, "Loneliness, helplessness and boredom."
Then Carroll turns to the wheelchair.
"Nina, how's it feel to be sitting there?" she asks.
"Kind of bored. Lonely," says Nina. "My butt's starting to hurt."
"And how long have you been there?" asks Carroll.
"About five minutes," Nina says.
"About five minutes," Carroll repeats. "Her butt's starting to hurt. Wow. How long do they sit in wheelchairs?"
"All day long," answers the class.
Carroll whispers to Nina to stand up.
"What happens if she stands up?"
"Beep, beep, beep!" shouts the class, imitating a chair alarm.
"Sit down, Nina!"
"Sit down, Nina," says Carroll, pushing down on Nina's shoulders to reseat her. She whispers to Nina to stand up again.
"Sit down, Nina!" the class insists.
"Sit down, Nina," says Carroll, reseating her. "Go ahead." Nina stands.
"Sit down Nina!"
"Don't touch me!" says Nina.
"Does anybody know what we should be doing?" asks Carroll.
"That's one answer," says Carroll. "There's a simple answer."
"Asking her what she needs," someone says.
"Why do I want to stand up?," asks Nina.
"Nina, what do you need?" asks Karen.
"I want to go to the bathroom!" announces Nina.
"How many times do we say, sit down, sit down, sit down, when all they have to do is go to the bathroom?" Carroll says.
"The old way of taking care of old people is passing," says physician Bill Thomas, who founded the Eden Alternative to put people and relationships at the center of daily life instead of institutional regimentation.
"Right here in Syracuse, New York, Loretto is taking on the challenge of creating a new way of caring for older people," he says.
Loretto has hired Thomas as a consultant to bring his ideas to central New York.
"It doesn't involve a fresh coat of paint and some new drapes!" he says. "It actually involves radical change that brings care for older people into the 21st century."
Thomas' book, and the class' textbook, is called "In the Arms of Elders."
It's an allegorical fantasy in which he and his wife, esteemed geriatric experts, become stranded on an island where wise, teaching "elders" are central to their community, including two old women who embody these values.
In Thomas' life, these teachers, called Haley and Hannah, are real.
"In real life, Haley and Hannah are my two daughters, who both live with a very profound form of neurologic disability," he explains.
Even though they are now in their pre-teen years, my two girls live at a developmental age of about one month. They both require round-the-clock care at home... and we love and adore them, and they are in fact our greatest teachers. They show me what genuine human caring is all about."
"Eden Associates" are trained to heed residents' voices and choices about their care.
"If you don't want to get up, you don't have to get up," says one trainee, explaining what she's learning in the class. "If you don't want a shower today, that's fine, maybe somebody can give it to you tomorrow when you do want it. That's how it should be, they should be able to have what they want when they want it. This is supposed to be a home setting, they should be able to do things how they would at home."
On the Cunningham's fourth floor, the facility's first to go "all-Eden," a corner of the dayroom has been set up to resemble a cafe. That's where nursing aide Ann Doss serves some of her elders breakfast.
"It gives them a feeling of community and like a little diner atmosphere," Doss says. "You'll never see all of us out here at one time because of their sleeping schedules, when they like to eat. Some people just don't like breakfast and I know this, so it's not a requirement that they come out and eat."
Doss says since Eden's been put into practice on her floor, her residents are generally less confused, depressed, fearful or agitated, and their appetites have improved.
"Long story short, my behavioral problems are down, my weights are up and my residents are happy," she says.
Soon one whole floor will actually look more like a home and community.
Loretto has gutted the building's top floor and is renovating it into a "neighborhood" made up of three 10-person households.
But changing the culture inside nursing homes is only a start.
"The old vision was that, either you get taken care of by your family in your home, or they pitch you into a nursing home," says Thomas. "The new vision is that there's an entire web of supporting services and that what you experience could vary according to your needs and the time and what kind of support you need. That's what's really different," he says.
Thomas created a completely new concept called "Green Houses," in which small groups of elders who require skilled nursing will live and grow together in actual homes.
The Green House movement started in 2003 with four Green House homes in Tupelo, Mississippi. Now there are nearly one hundred Green Houses in 15 states, and 120 more under construction in 11 others.
Long-term studies by researchers at the University of Minnesota have found that living in Green Houses improves residents' physical and mental health, and their loved ones even spend more time on visits with them.
Eden residences also have greater staff satisfaction and lower turnover.
Thomas says he has 70 million reasons why he thinks the movement will go down as a revolution.
"Every day, every baby boomer wakes up one day older. And that iron law of aging is going to keep working every single day," Thomas says.
And so, with 70 million baby boomers coming down the aging path, there is going to be a real revolution, there will be a real social movement, and you're kind of showing people today that that revolution is already here in Syracuse right now."
Loretto is following Thomas' vision all the way down the garden path. The non-profit is building 13 new Green Houses in the Syracuse suburb of Cicero.
Tammy Marshall says Cicero sees the project as a welcome development.
"It's beautiful, the homes are beautiful and it brings in a richness to the community that might not have ever come," Marshall says. "So, I think it's full circle, in the house and out of the house in terms of the benefits."
But while Green Houses can operate for about the same cost as nursing home care, that calculation leaves out the costs of construction.
Marshall says there's some help from grants, but admits at the moment the 40-million dollar project includes "somewhat of a deficit."
Thomas says that issue is not stopping the movement from spreading, nationally and internationally.
"It's not on the shoulders of Loretto alone or the state alone or the people of Onondaga alone," he says. "It's a cooperative effort, but there is going to be a capital campaign to support this work and people who are interested in seeing a better life for elders will need to contribute."
Administrator Maxwell says she's seen that better life for elders.
Loretto persuaded her to move here from Michigan, where she led her last employer's culture change as it opened two Green Houses specifically for elders with dementia.
"They have huge dementia issues and they're on several medications," Maxwell recounts. "And when you see them move into a Green House, being able to wander wherever they want, nobody telling them to stop doing this because you're going to interfere with another resident in a traditional setting, and having that freedom... And then within 30 days, 45 days, being able to come off of those medications and being able to live and just act totally normal, there's magic that happens in these homes."
At the graduation of Loretto's latest class of Eden Associates, Maxwell listens to an inspiring poem nurse's aide Lorraine Preston wrote in the class.
"My provider, whoever you may be,
your title is really not important to me.
My provider how you act on my behalf
may spring new life or maintain strife "
Then Maxwell administers a reality check.
"When you get up on your floor, it's going to be the same floor, right? And you say, Holy cow, I still have this many residents to care for, I still have to do the dining, I still have this and this and this. That doesn't go away."
Up on the floor a few weeks later, nurse's aide James Watson says things have changed.
"It's no more attitudes and everything," Watson says. "Everybody is perked up and ready to work and that's how it should be."
Lena Hamilton says she's always enjoyed her work but now she's more relaxed.
"Now it's more like grandma instead of like a child," says Hamilton. "We've stopped the 'please sit down, please sit down,' to letting whoever can walk, walk-- just keep a close eye on them."
Before, I felt like they were like glass, like, 'Oh, they're going to fall, they're going to break!' But now I know I can trust them a little more, the elders."
To promote that trust, Loretto is working with the state to educate inspectors.
But meanwhile, the fear of getting in trouble still sometimes prevails.
On one afternoon before dinner, busy nurses dispense medications while aides work to keep a stream of residents safe, entertained and toileted.
When one man asks to be taken to his room, a nurse's aide asks the charge nurse if he can be in his room alone. The answer is no, so the aide wheels him into the crowd of chairs around the TV and urges him to watch.
Maxwell says at her last job, the culture change took seven years and was the hardest and also the best-- part of the experience.
Thomas says that process will be ongoing.
"There will be no finish line where we can say, Ha Ha! It's done next challenge!'" he says. "But the reason I am so confident is that the hardest part is getting started."
That start is under way in what had become an entrenched institution.
"This is their home for that part of their journey in life," Maxwell says.
But while the Harkolas know this is not home, Margaret describes it as just a nice place to stay while they contemplate selling their seven rooms and four acres.
"I like it here very much, it's a beautiful place, you know, to get away from everything. And it's kind of a different way of life because it's not enough room but who in the hell needs it? Don't need it!" she says.
If this ended up being their home, would that be OK?
The Harkolas nod. "We have everything we want," says Ben. "There aren't too many restrictions.
"And there's an awful lot of nice, nice people in here," Margaret says. "You would like it here."
To find long term care facilities that are certified Eden homes, visit the Eden Alternative Web site at http://www.edenalt.org/ .
To find Green Houses in operation or under development, visit http://www.thegreenhouseproject.org/findhome .