WATERVILLE, Maine — Long tables were set up for a game of bingo last Friday morning when 44-year-old Kara Janes of Castine rolled her wheelchair into the sunlit activity room at the Lakewood Continuing Care Center.
Using her strong left arm and hand, Janes propelled the manual wheelchair across the polished tile floor. Her right hand lay useless in her lap. Oxygen tubing looped across her face. Although she was initially cheerful and sociable, it didn’t take long for her eyes to fill with tears as she struggled to describe her experience at the 105-bed nursing home.
“This is not in any way an evaluation of Lakewood. It’s my own emotional journey,” she said. “I told myself it wasn’t going to be the way everyone said it would be, but it is.”
In reality, Janes is in good health and does not need nursing home care.
She is a graduate student in social work at the University of Maine, who has elected to spend 10 days at Lakewood in order to build empathy for her clients and enrich her clinical understanding of the long-term care environment. Her placement is coordinated and evaluated through the “Learning by Living” project at the College of Osteopathic Medicine at the University of New England, which has campuses in Portland and Biddeford.
On Friday, midway through her stay, Janes stressed that the staff at Lakewood has been kind and competent. The facility itself is clean and safe. And her “diagnosis” — a stroke resulting in right-sided weakness and a case of pneumonia due to an impaired ability to swallow — is not real. Janes is due to be “discharged” later this week and will go home to her husband and children.
Nevertheless, Janes said she has felt lonely, bored and depressed at Lakewood. Stripped of her identity. Dehumanized. Degraded. And committed to changing the way Americans are treated as they age.
“I have this overwhelming sense of responsibility that I need to be the voice for the people who go through this day after day, month after month,” she said.
Although most of the Lakewood staff know her real identity, Janes has accepted no special privileges during her stay there. She has been fed a pureed diet. Woken in the night to be assisted onto the toilet. Lowered naked by a mechanical lift into a whirlpool tub.
“You lose your independence. You can’t think for yourself. Everything is done for you,” she said.
Janes declined to have any visitors during her stay — not even her immediate family — knowing that many nursing home residents go long periods without seeing a single familiar face from their earlier lives. On her second day at Lakewood, her own mother was hospitalized, she said, and she has received little additional information. She has missed her husband and children fiercely. She feels isolated from her real life.
“There is such a disconnect,” Janes said. “You don’t know … the ins and outs of the daily lives of your loved ones.”
Lakewood administrator Shannon Coro is not dismayed by Janes’ emotional account of her experience. Lakewood agreed to participate in the Learning by Living project in order to gain valuable feedback on its performance while supporting the education of professionals who, like Janes, aspire to working with the elderly, Coro said.
“We went into this [project] with our eyes open,” she said.
There is no question that many nursing home residents go through a period of sadness and disorientation when they transition from independent living into an institutional setting, she said, but high-quality nursing homes like Lakewood work hard to engage their residents and to build a sense of community.
There’s no place like home, but a busy in-house social calendar, regular shopping excursions and other “field trips” along with a cadre of dedicated volunteers help make Lakewood more livable, Coro said.
She noted that Janes, like most of the residents at Lakewood, has made choices about the care she gets. Residents have control over what time they get up in the morning, what they eat and what they wear — even whether to be nude or covered in the whirlpool bath, she said. They can choose to participate in organized activities or not.
“It takes time to get used to a new home,” Coro said. “This is what we do, and we do it well.”
Developed in 2006 at the University of New England, the “Learning by Living” project places students in long-term care settings in order to develop their empathy, self-knowledge and clinical skills. Program founder Marilyn Gugliucci, director of geriatrics education and research at the UNE College of Osteopathic Medicine, said 28 students in Maine, New York, Massachusetts, Ohio and Pennsylvania have participated to date. All of them, except Kara Janes, have been medical students.
Janes’ experience is not uncommon, Gugliucci said, although her particular professional training may have heightened her emotional response.
Midday through her stay, Janes was still “looking through her social-work persona,” Gugliucci said. “It takes a while to get past that to the essence of yourself.”
Students in the program typically experience several days of loneliness, homesickness and depression, hitting an emotional low on day four or five, Gugliucci said. After that, they most often come to terms with their new environment and find themselves part of a powerfully connected social community that cuts through age differences and defies stereotypes.
“Students agree this project helps you learn about yourself as a person,” she said, “and knowing who you are, you provide better care.”
Janes agreed that the experience of living at Lakewood, even for just a few days, will powerfully impact her professional practice.
“This should be part of everybody’s training — doctors, nurses, everybody,” she said. “I am surprised it hasn’t been required yet.”