Brigitte sits sideways on her bed, in the middle, where the security side rail ends. She wears a night gown, a white terry cloth towel draped over her shoulders. Her wavy white hair is gathered in a becoming ponytail. This is my first visit since Brigitte recent admission. We talk about her food preferences, her clothes and her freedom.
One year later, Brigitte still keeps the night gown on, all day long, every day. She sits at the same spot on her bed, unless she slowly strolls along the hallway looking for help, the phone or the garden door. Her eyesight has been weak for many years. Now, she keeps her eyes closed. During my visits to her room, I have asked her a few times: “Would you prefer to sit on a chair?” The answer has always been negative. As I was gaining Brigitte’s trust, I discovered her territory. Covered with a single white fitted sheet, the bed is the center. It’s her nest. Under her pillows she hides her important possessions. A few clean terry cloth and paper towels are spread over the bead, at arm’s reach, as well as the folded top sheet. On each side of her feet, encased in worn out felt slippers, Brigitte places doubled brown shopping bags; the left one for condiments and drinks the right one for garbage. A few non perishable snacks sit on the window sill, next to a basic set of plate, plastic bowls, utensils and a bread basket. Usually a couple of underwear is drying over the protective grid of the heater, under the window sill. When Brigitte feels tired she spread the top sheet over her body, leans over to the left and curls for a nap.
Her simple way of life, quasi monastic, was unusual in her “neighborhood”. Only sick or bedbound residents would wear nightgowns all day long. The others got dressed before 8 a.m., took their meals in the dining room, and sat, at least part of the day, in communal areas.
The care team encouraged Brigitte to dress up and to blend in the “neighborhood’s” routine. We tried to address her fears, her needs, and her frustrations. Could she evolve? One day she ventured into the day room when I was playing the accordion, her body slowly swaying, a half smile brightening her relaxed face. The nurse inquired if she was all right: “I am dancing to the music.” was her answer.
I recently discovered that the “monastic” way of life of Brigitte, with variations, is more common than I thought. I was assigned to visit residents in a different “neighborhood”. One early afternoon, I met Amanda. She was seated sideways in the middle of her bed, her legs dangling next to her electric scooter. She was wearing a nightgown. She welcomed me with a big smile. She turned the TV off, removed the lunch tray from the seat of the scooter and invited me to sit there. We talked about her family, the women’s lib and her lack of desire to move away from her bed. Two little tables were placed close by, overflowing with papers, books, candies, phone, remote, pen, and what not. A few days later I saw Amanda riding her scooter, in a flowery dress and straw hat, on her way to a podiatrist appointment.
Across the hall from Amanda lives Tessa. “She likes the weekly community meeting, encourage her to come.” I was told. Twenty minutes before the meeting, I knock at her door. “I am Olga. Would you like to join the community meeting? –How kind of you. I would love that. When does it start? –In twenty minutes. –Oh, I had no idea. I am not ready. Could you call someone to help me?” Tessa, after eating her lunch in bed, was still in her night gown. An assistant came in. She quickly helped Tessa get dressed and transfer to her wheelchair. We were able to join the meeting as it was starting. I discovered more about Tessa, her hypersensitivity, her high standards. Staying in bed, in her own cocoon is where Tessa finds comfort and safety. She moved three times in the last year. Her bed-centered room is an environment she can control.