When you no longer understand our language,
We will try to grasp yours,
We will cherish the fleeting signs of
knowing in your eyes,
Your soft smile tells us
You have not yet gone.*
The loss of understanding or comprehension signals the final decline in social interaction and in the loved one’s mental health. The decoding of the essence of the loved one is now weak and undependable. A new language is now a must – a language with no dictionary, no crash courses to help nor audio or video tapes to capture the wide ranging expression of wants and needs.
At this point, words seem immaterial. They are not conveyors of those vital human linkages that help others know what we are feeling or thinking. This may have been our most frustrating time with our mother because connections disintegrated. They dangled in timeless and vast spaces of silence and darkness, out of her and our reach.
Nevertheless, we did not give up our hope and effort to communicate with her. Her life experiences were now one-dimensional, contained in one fleeting moment. No connections with the past or future could be found even to enrich the moment. So, what was the new language she used? It was almost totally nonverbal: nods, furtive glances, wandering, teeth gritting, one word utterances, outcries, grimaces, and smiles.
As we noticed her various emotional expressions, we responded in trial and error ways to bring her comfort and guidance. More than ever, the tones of our voice responses, the “feel” of our touch and the dependability of our presence were important. Our nonverbal cues were strong indicators to her of our feelings. The sound of our words to her seemed comforting, even if they were not understood.
The nature of her engagement in activities was tempered by her frustration with her losses. For example, Mother would become obsessed with a magazine label; she would read it repetitively, trace it with her finger, and finally her frustration would express itself in an outcry of desperation. Usually we redirected her focus. The centerpiece of our efforts to understand our mother’s needs was now the language of nonverbal cues and intuition. For example, when she started folding her lap throw hurriedly, we knew a bathroom break was in order.
As we learned the cues, we could help her in ways that could avoid, delay, or stop her painful experiences. Of course, the best initiatives on our part were taken before she experienced discomfort. This was not always possible.
We continued positive sharing such as petting household animals, looking at flowers, putting together a simple puzzle, coloring, singing, listening to music, and reading from the Bible.
A caregiver, already weary from the demands of constant caring, can easily become frustrated in this period of virtual isolation from one with whom interaction has been a two-way lifeline. The grief and sense of loss in this estrangement are overwhelming. It is important for the caregiver to understand the change is not willful withdrawal. Rather, an unmerciful disease has now destroyed the most powerful gift of human existence – the gift of understanding the meaning of words and cues, the recollection of experience, and the integration of the two to make any sense of what’s happening around him/her.
Explaining, urging, justifying, inquiring, and asking or telling are now defunct. They are heard but not understood. But the caregiver has two powerful connecting tools: nonverbal cues and intuition. I‘ll write more in future articles about the subconscious, but never underestimate what your loved one is “hearing with a third ear.”
* From the book, Please Take Me Home Before Dark: One Family's Journey With Alzheimer's Disease by Billie Pate and Mary Pate Yarnell