The Gift of Our Presence

Communicating with the Alzheimer's Person

by C. Gourgey Ph.D., MT-BC, LCAT
 

(Reprinted from Caregivers Connection, No. 46/47, July/August 1995)
 

Once a very active woman with a business of her own, now she sits on the sofa and cries. She is surrounded by friends only too eager to help. "Would you like to get up and walk now?" "Would you like to hear the songs from 'Carousel'?" "How about if I read to you something?" The questions might as well be shouts. The wall around her thickens. Nothing seems to penetrate her unhappiness.
 

Alzheimer's disease brings stress and heartache to many families. If the disease were only a deterioration of the body it would still be hard, but at least we could communicate with the person we love. What is hardest of all is our sense that the actual person is getting lost. We lose the person while he or she is still alive. We want to grieve, but that seems inappropriate with the person still living. The temptation to compel contact, to try too hard to give, to "force-feed," is very great.
 

As one who has Alzheimer's changes we, too, need to change, but it is difficult if we have learned only one way of communicating. In my work with Alzheimer's patients and their families I try to demonstrate another, which sometimes helps when words fail.
 

As a tool, purely a means to an end, I use music. My instrument is the recorder, familiar to many as a type of wooden flute. When I visited the woman with Alzheimer's, I often found her agitated and depressed. She had a piano, though usually she did not want me to play it. She would remain in her tiny sitting room, refusing to approach the piano, but allowing me to approach her with my small flute.
 

When playing for someone with Alzheimer's one does not play merely to entertain; one focuses one's attention carefully on the person receiving the music. It becomes communication without words: one makes subtle changes in breathing, intonation, eye contact, answering the changes in the listener. There is a delicate alternation of responses. The player is also a listener, noticing changes in attention, posture, mood, as well as subtle movements of the hands or eyes. The player responds to all of these, letting the music carry the message.
 

As I play for the woman with Alzheimer's, I find she most likes the lowest, softest tones of the instrument, a gentle, soothing breeze of sound that does not overstimulate her. Her mood does not immediately change for the better; sometimes she tells me abruptly to stop. I comply, then wait for another moment of entrance. I am persistent, but careful always to play with her, never against her. After a while she relaxes her hands, turns her eyes toward me, closes them, then falls asleep for a few precious, restful minutes.
 

A man with a similar condition has been a source of great frustration to his family. His brother used to see him several times a week; now just a few times a month. The brother is depressed, exhausted; he remembers the old times, the good times, the endless discussions about politics and current events. He cannot bear the contrast with the present failure to communicate.
 

This man is a tough audience. He has a restless habit of wandering out of the room, even during my music. When I first saw him he was verbal, often critical of my playing, sometimes approving, sometimes not. He is always silent now. It seems as if my playing supports the family more than it does him--until the very last moment of the visit. Then he takes my hand and holds it for a long time. His deep blue eyes embrace mine. I can almost hear them whispering: "Please, don't give up on me."
 

To reach people like this, one need not be a musician. It is not the musical performance that touches the hearer; it is the presence of the one who plays. Music is merely the means. Many other instruments may carry the conversation.
 

To impress someone whose mind seems to recede, who while physically here is really far away, is like recorder playing without the recorder. One becomes finely tuned to that person's wordless messages, responding through one's presence: the way one sits next to that person, touches that person, says something, or sits quietly and says nothing. Without a recorder, one's being, one's personality, becomes the instrument, through which one senses the other's reactions while searching for a way to answer. Even the smallest movement has significance: a hand held, a word spoken, a look returned.
 

When we give our presence to another, even silences can speak.