We exist within our bodies. Our bodies allow us a means of expression and communication. We are not, however, our bodies. We are luminous beings. We are pools of water with awareness, who happen to be temporarily wrapped in meat. I admit, it is a persuasive illusion, but the reality of human existence is life in the form of spirit. What “we” are can be reached despite obstacles presented by differences in language, experiences or disease. Solving the problem of how to get through and reach understanding with dementia patients has been reinforcing this truth.
One woman’s brain has a disconnect between what she is thinking and what she says. She’s forming sentences internally and saying things that make no sense, but with a conversational tone that makes it obvious she doesn’t know she’s speaking in what is called “word salad”. She was a teacher, and has an impressive vocabulary. Fortunately, she’s still inquisitive. That is the essence of what drives her. She’s curious about everything, just like me. We meet on that common ground. Every couple of sentences, she will end with a query. She wants to be listened to, to feel connected.
“Do you think we ought to get some minna tee be saw backs?”
“Sure. Why not? We can do that after lunch.”
“Oh, good. As long as you can get those wheedles stabilizers.”
“I’ll do my best.”
I share lovely, sincere smiles with her, and she is content.
One fellow is going to be 98 years old soon. He sleeps most of the time, often seated on a couch in our room with the fireplace. He has ruptured disks in his lower back, takes massive doses of pain meds and he can not stand up without assistance. He’s also nearly blind, and has hallucinations based upon his long life of hard work. When I come to get him for a meal, I tell him it’s time to take a break and get something to eat. He’ll say something like, “Well, all right. Gotta eat some time.” I place his strong arms around my shoulders and tell him we’ll do this together so it won’t hurt. By slowly pulling him toward me while my arms are under his I can raise him up smoothly with no strain upon his back. When he is standing successfully, he pats my back and says things like, “We did it. That’s good.” His whole life has been shaped by tasks. When we approach each thing to be done like a work project, he is content.
Meal times are satisfying exercises in shared communication without words. Some residents eat unassisted, but many need some help. Part of our duty to empower and respect them is to assist only to the degree required. I may cup my hand around another’s while he holds a spoon. He will point the spoon toward what he wants, and I will guide it into the food and steady it as he raises it to his mouth. He is choosing what to eat and how much. I’m providing follow-through to his intent. By not speaking or drawing attention to this process I become invisible, and his reality is balanced inside and outside of his perception.
Another man was sitting with us while this was going on. He had been taught that men must do everything for themselves and accept no help, and he was irritated at first.
“He’s a grown man. He should be doin’ that for himself!”
“He wants to, but he can’t, Bill. It’s all right. I’m paid to help him.”
“Oh… Well, I guess it’s a good thing you’re here, then.”
There’s another woman who was born in Europe and moved here after World War II. English is not her first language. She was raised to be a racist. One of the care-givers who is Black discovered her in the wrong room, and she responded violently when the care-giver attempted to direct her to the right room. I came to assist. She began chattering at me in the words of a language I don’t speak. However, there’s another language we all recognize. I could tell by her tone she was angry and wanted validation, so I nodded my head in agreement and touched her in an encouraging and gentle manner. She calmed down, and in a few minutes came along with me to her own room. I tucked her into bed that night. She offered her arms, asking in the foreign tongue if I loved her. I hugged her back and kissed her forehead, and she went to sleep like a happy child.
Just like the residents at the care home, my true self exists in containment. I must express myself through my own level of understanding, in the context of my experiences, my state of health and my own physical limitations. The tone that I am passes through filters. My part and your part of the melody harmonize, and the song gains another verse.