“Sitting across from each other, we are trying so very hard to communicate. I apologize to her repeatedly for misconstruing what she attempts to tell me. She searches futilely for the word I will understand, for the English word which holds her meaning. More time! More time.”—William A. Balk, Jr.
By William A. Balk, Jr.
ELKO South Carolina—(Weekly Hubris)—8/1/2016—Sitting across from each other, we are trying so very hard to communicate. I apologize to her repeatedly for misconstruing what she attempts to tell me. She searches futilely for the word I will understand, for the English word which holds her meaning. More time! More time.
More time will not serve us well. It will not clarify our exchanges nor provide the needed vocabulary. Each day brings further limits to language’s ability to connect us. For the several years since we recognized dementia’s onset in my mother, I have been preparing her and ourselves for her eventual loss of language. We are making alternatives to the use of words, practices which might augment language, in order to keep open lines of communication for as long as we can.
My mother has not lost language—not yet, anyway. But a simple word—an adjective to describe how she is feeling, a noun naming the location of a pain, an idea more complicated than, “I’m doing something! Don’t interrupt!”—these functions of language are not always available to her when she needs them. Sometimes this results in her stammering in search of a word which will not appear. Usually, now, it means she retreats to the absolutely true “I don’t know,” when she is asked for a response.
Most of the time, words are useful between us in a support role: over the last couple of years, I developed a number of phrases to describe precisely a function I want my mother to perform, or to prepare her for something I need to do for her. The phrases rarely vary, and I began using them a year or more ago when such rote was not yet essential. Now, when I need to assist her in standing from her chair, I describe each step in the process before we execute it.
“Mama, I’m going to help you stand up in a minute.”
“I’m going to move your tray out of the way over here.”
“Let’s put your little pillows over here, so we can put them back when you sit down.”
“I want you to wiggle up to the front edge of the chair, and I’ll help you.”
“I’m going to move your feet so you can stand up more easily.”
“When I count to three, push up with your hands, and I’ll help you stand up.”
“Wonderful! Now get your balance . . . and stand just a little straighter.”
“Now, take four steps in that direction. I’m holding on to you, and you cannot fall.”
These eight phrases are uttered each time my mother gets up from her chair to sit in her wheelchair. No longer instructions, they are mnemonics for her, offering a sense of what to expect. The words’ import is drawn from acting repeatedly in a certain way, not from their intrinsic meaning.
When there is variation in the process, there is always confusion as she tries to comprehend precisely what is being asked of her. We have adapted language here to serve as a touchstone for ritual, rather than as a vehicle for conversation.
All human activities comprise deeply complex processes though, for most of us, eating and walking require no forethought whatsoever. For my mother, however, a plate of food presents great challenges. Sometimes, it is not immediately obvious to her what this object in front of her is, so a recitation of the familiar names of the foods is reassuring. What, exactly, she is to do with a fork is not always clear. Verbal reminders still suffice, usually, but many times she will forget what she’s to do even after several bites. Grateful for our months and years of preparing for this, I find that supplementing the language with repetition and with simple gestures provides clarity for her.
There is a kind of cliché praise given to caregivers, acknowledging the sacrifices involved in such care, often ascribing levels of virtue to the caregiver. We caregivers just as often will offer in reply that the care we are able to give is more rewarding than the effort demanded of us. I think both observations are essentially correct, albeit perhaps simplistic.
As caregiver, as translator and interpreter, I have had to humbly offer empathy, listen acutely and attentively, and sharply hone my words. It is a skill set for human survival, not just for patient care.
My mother is vibrantly present. She is by nature kind and appreciative, and she frequently finds either language or other means to express fulsome gratitude for the care and love she gets from those around her. She is charming and engaged with visitors, who don’t usually recognize that all her conversation and responsiveness during a visit has been gesture and expression implying engagement.
Her apparent involvement in conversation with a visitor is perfectly genuine and apparently unhampered by her deficits, but it is no longer her facility with language or language’s expressive range that makes it so. Rather, she has found her own means to compensate for the deficiencies inherent in her diminishing linguistic abilities.
Language fails us. Words lose meaning; words disappear. The essential function of language, however, remains, and we are forced to imagine alternate means of conveying ideas, new methods of sharing feelings, sensations, emotions.
It was always thus. Language is a miraculous tool, developed to enable complicated communication among our species. Even when that tool is unavailable, the imperative to communicate will make its own way.