by Beth Quill
Taped to Gene Sampson’s apartment door at the Ontario house is a homemade sign colored with markers that reads in bright, bold letters: “Welcome home, Geno!”
The sign celebrates Gene’s return from the hospital, but it symbolizes something much more. It serves as a continuing, poignant reminder of the support the L’Arche community provides during times of illness.
Appointments, referrals, medications, paperwork – L’Arche community members who provide assistance to core people have those details covered, and that is no small feat. Still, the support goes much deeper.
“We’re not just physically present – to provide needed physical care,” says Megan Herron, the home-life coordinator at the Ontario house. “We are being emotionally present.”
Gene has had health troubles before: He has battled cancer, pulmonary disease, and the pain of arthritis. Most recently, in March, Gene suffered a stroke and spent four weeks in the hospital. During that time, the house was different. There was an empty seat at the table, says Jonathan McGraw, who supports Gene in managing life’s details. Gene’s room, in the most active part of the home, was empty. His birds, Molly and Holly, called insistently for him, wondering where he was.
People at the Ontario house reacted as any other family members would. They told stories about Gene, they prayed, they visited him – even throwing an 80th birthday party for him at the hospital. (Pictured above with Kathleen Kang.)
When something happens to a community member, Jonathan says, people are worried and concerned. “I’m not just working with Gene,” he says, “we share a house and life together.”
Jonathan and other accompaniers also take on the role of advocates. When it comes to the health of core people, the rest of the community knows what is going on and makes sure doctors are taking concerns seriously. A number of years back, when Gene complained about arthritis pain, his doctor (a gerontologist, no less!) dismissed it as part of old age. So Gene and his accompanier found a new doctor who addressed the issue.
Most doctors, Jonathan says, tend to be impressed by the attention that core people receive and the competence of the accompaniers.
“When a L’Arche patient comes in, it is very clear what is going on,” says Dr. Donna Chacko, one of Gene’s physicians. Core peoples’ accompaniers, she says, offer information and a degree of consistency that is rare among other patients. And it makes all the difference in the world. L’Arche patients tend to have better control of chronic medical problems, get more exercise, and have more reliable diets.
“It is impressive to watch the amount of care and how it is adjusted over time,” Dr. Chacko says.
One huge advantage of having an accompanier go to doctor appointments with core people is that the accompanier knows what is normal, Jonathan says. On the night Gene had his stroke, for instance, he had trouble talking and was off balance, changes that might have gone unnoticed by someone who knew Gene less closely.
The intimate knowledge of core person behavior also allows community members to take preventative measures.
“We give so much one-on-one care that it is also our responsibility to anticipate needs,” Megan says. If she sees a rash or someone has stomach trouble, the problem is discussed and a nurse is consulted right away.
She and the other community members also know how core people behave and express themselves. Some don’t talk much about their pain, and others have trouble remembering doctors’ instructions.
As impressed as Dr. Chacko is with the care that L’Arche provides, community members are equally impressed with the care Dr. Chacko provides.
“When you talk with Dr. Chacko,” says Megan, “she is never talking about just what you came in for. She treats the whole person.”
This philosophy – integrating all aspects of a person’s well-being – is part of the mission of Columbia Road Health Services, where Dr. Chacko practices.
“You have to try to think about the whole picture,” Dr. Chacko says.
Megan says she and other community members try to incorporate this holistic view too. When someone had a serious bowel obstruction that necessitated a lengthy stay in the hospital, for instance, his entire lifestyle was addressed.
“I was proud of the way we responded,” she says. “We were thinking about his environment, his diet, his sleeping schedule.”
And keeping core persons’ wants and desires in mind can be equally important. Independence has been a major issue for Gene because he used to get out and take walks around the neighborhood. Now both he and other community members are worried about falls.
“He is an endlessly strong man, truly the father of our community,” Megan says. “Yet now there is this great frailty to him as well.”
Megan expects that balancing independence with safety will become a bigger issue as core people get older.
As for Gene, he says he doesn’t like all his medications, but he is happy to be back at home with his two birds. And he is glad to have the support of people like Megan, Jonathan, Dr. Chacko-and the entire L’Arche community.