JOURNAL OF NEUROLOGY AND NEUROSURGERY

Abstract

The following short story is inspired by research conducted in a long-term care facility (e.g., Swain, 2013; Lapkin, Swain & Psyllakis, 2010).  Alise and Her Stories represents a fictional amalgamation of four case studies of residents in the long-term care facility who were diagnosed with mild cognitive impairment.

►Alise and Her Stories

Merrill Swain Ph.D^1*

^1*Professor Emerita in the Curriculum, Teaching and Learning Department at OISE at the University of Toronto.

Staff at Evergreen Seniors’ Residence in Toronto considered Alise to be forgetful, uncommunicative, and aloof. When Carla, the new volunteer, arrived, they told her Alise was “a difficult person who has some memory loss and refuses to engage socially.” This didn’t bother Carla—her mother had become difficult and experienced considerable memory loss when Carla was her caregiver in the last years of her life.

As the months went by, Evergreen staff were surprised and puzzled that Alise hadn’t complained to them about Carla. And they were astonished when, one day, Alise reached out, suggesting a get-together in the lounge.

When Alise was younger, if she hesitated when speaking, it meant she was thinking; now, at eighty-two, people assigned other meanings to her pauses. It started years ago: people began to take away her words, her sentences, even whole thoughts, substituting them with their own. It annoyed and frustrated Alise. How dare they speak for her! If given the time, she could still unearth the missing words from the shadowed corners of her brain. Occasionally, Alise misspoke, saying dinner when she meant breakfast, or trumpet when she meant flower. Others thought her mix-ups funny and chuckled. But Alise was mortified. From time to time, she could sense that the wrong word was about to leave her mouth, and she could stop it, but that left an uncomfortable hush. And sometimes, in the middle of a conversation, she became distracted and couldn’t remember what was being discussed. Too ashamed to acknowledge her failing memory, she might startle others with a weird topic change or drop the subject altogether. The blanks in her head were frightening.

Alise knew her behaviour unsettled others; she felt it in their irritation, their impatience, their pity, their sorrow. At Evergreen, she overheard snippets of conversations: “so annoying,” “lost something again,” “sorry for her.” The daily humiliation and shame left her angry, defiant, and lonely. She retreated into herself in her small apartment.

Alise filled her small suite with books, piled them high on the windowsills and on her nightstand. She carried a book with her to the lounge and to each meal. These were small acts of defiance: a way to demonstrate to others that she was an intelligent person, a way to keep herself separate from others in case they might discover her lost memory. The books hid her vulnerability. “Don’t bother me; can’t you see I’m reading?”

Alise had the autobiography of Richard Burton on her lap the first day Carla dropped by. With serious hesitation, Alise offered Carla a seat. After an uncomfortable silence, Carla inquired about the book. Alise told Carla that she adored Richard Burton, even though he drank far too much, like her husband. Alise mused aloud, “How could he remember his lines, him being so drunk all the time?” As they got to know each other, she told Carla that she often compared her husband to Richard Burton: both were handsome and masculine, both loved theatre, and both consumed far too much alcohol. Richard could do no wrong. Because Richard was so often inebriated, Alise had accepted her husband’s frequent bouts of heavy drinking.

A week later, Carla stopped by again. Alise was embarrassed because she couldn’t remember the woman’s name, though she remembered they had talked about Richard Burton. This time when they spoke, Alise’s brain had to work hard; it was so out of practice. Carla asked Alise about her home country of Latvia and about how she had come to Canada. It felt like eons since Alise had thought about her teenage years. She struggled to find those memories, searching desperately for words that brought them into being: “Russians” … “German army” … “war over” … “brother found her” … “Canada.”

Carla listened attentively, occasionally prodding Alise to hunt around further in her blurry brain by providing a hint or asking a question, always giving time for her pauses. When Carla left, Alise felt exhausted. But as the days passed, she thought more and more about that time in her life, and so it was with both excitement and trepidation that she awaited Carla’s next visit when she would try again to tell the story. After that, they often revisited the subject, giving Alise time to work out the sequence, details, and emotional complexity of events.

For one visit, Carla brought a movie starring Richard Burton. Alise, elated and filled with gratitude, gave Carla a little hug. They sat side-by-side on the small sofa in Alise’s tiny living room and pulled up a wooden bench for the laptop. Carla and Alise were huddled over the laptop when a loud knock on the door startled them both, so absorbed they had been in the movie. In walked Margo, the pill lady, pushing a cart. And suddenly, the atmosphere in the room changed.

Margo stood facing Carla and Alise, taking in the scene, including the back of Carla’s large laptop. Margo politely introduced herself to Carla. Then, focusing on Alise, raised the pitch of her voice an octave and her volume to playground-supervisor level: “You know you have to take these pills, Alice.” The mispronunciation of Alise’s name was intentional, removing Alise’s Latvian identity. Margo turned again to Carla, lowered both the pitch and volume of her voice, and, speaking as if Alise were invisible, asked Carla what they were doing on the laptop.

Carla explained, “We’re watching a movie,” as if that were not self-evident.

“Why?” demanded Margo.

“For fun. Alise loves Richard Burton, so we’re watching The Robe. It takes place in ancient Rome and Jerusalem.”

“What a waste of time. If you think she’s going to learn anything about Rome or Jerusalem, forget it.”

Carla was not only aghast at Margo’s comment, but that she had said it in Alise’s presence. Carla started to speak but was cut off by Alise. “Get out of my room!”

Margo turned abruptly and, pushing her cart, exited, slamming the door behind her.

After a tense silence, Alise turned to Carla, “They all think I’m just a stupid old woman.”

“I can see why you don’t like her,” Carla said calmly and compassionately. “And you know you’re not stupid!”

They looked at each other, rolled their eyes, and laughed. Alise pointed her head towards the laptop: “Let’s watch the end.”

Carla continued to visit Alise. As Alise responded to Carla’s gentle probing, she re-created and expanded her memories. Carla allowed Alise the freedom and time to remember, and to make mistakes without being judged. When a story had become rich and full, a process that sometimes took months of retelling, Carla entered it into her laptop and printed a copy. Alise added each story to a binder that stood proudly among her many books. As Alise recalled and re-read her stories, she felt empowered. She wasn’t that stupid old lady they thought she was; she had lived a long and interesting life.

One day, Carla told Alise that she was moving to another city and would only be able to visit her occasionally. Alise felt sad and lonely and frightened. After days of sorrow and crying, she stood and retrieved her binder of stories and began to read, first silently, then out loud.  Reading aloud gave her the idea. “Yes, that’s what I’ll do; I’ll read to others.” She told Carla about her idea, who in turn suggested that other residents might also have stories they want to tell or write and read. “Maybe you could help each other write stories. Then you wouldn’t miss me so much.” Alise thought for days about Carla’s suggestions, and then she picked up the phone and called the residents’ supervisor. She would start with the story where she compares her husband to Richard Burton.

1. Lapkin, S, Swain, M. Psyllakis, P. (2010).  The Role of Languaging in Creating Zones of Proximal Development (ZPDs): A Long-Term Care Resident Interacts with a Researcher. Canadian Journal on Aging. 29 (4):  477-490.
2. Swain, M. (2013). Cognitive and affective enhancement among older adults:  The role of languaging.  The Australian Review of Applied Linguistics. 36(1):  4-19.

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