We see with more than our eyes, touch with more than our hands, hear with more than our ears and love with more than our hearts.
Helen was bora in 1917 in the Midwest. She and her family moved to Oregon in 1937. Here she started and finished beauty school, opened her beauty shop, married, and participated in communiry affairs.
She was diagnosed as having multiple sclerosis when she was 40 years old. Her reaction to having the disease was one of anger and determination. The progressive stages of multiple sclerosis plagued her personal and professional life for years. At the age of 64, her disability necessitated the use of a wheelchair and a bedridden existence. Home care was no longer possible when she became severely disoriented. Helen entered a nursing home in 1982 and it was here that I came to know her.
My first encounter with Helen was accidental. I was trying to work with an individual in the adjacent room who was having no part of my attempts to be useful. My client's blunt response was, "No, not today! How can 1 get any rest with that awful noise next door going on day and night?" And, indeed there was a shrill voice repeating an indistinguishable sound. I don't know whether it was curiosity or empathy that prodded me to investigate, but I was totally unprepared for what I saw: A tall, thin woman confined to a geriatric chair, grey hair awry, glasses askew, crying, repeating a monosyllable word while rocking in her chair. I stood before her, but my presence went unacknowledged. On her identification band was the name Helen. I pulled a chair close and sat down in front of her. The noise continued. I spoke her name. No response except the perseveration of what sounded like "water." Perhaps she could not hear my voice over me noise or perhaps she had impaired hearing. I leaned forward and spoke distinctly and slowly, "Helen, can you hear me?" Still no response. The rocking and the crying and the shrill "wata, wata, wata" continued. Little did I know that for days that would be the only word I would hear Helen say.
My counseling preparation and experience has taught me that a combination of close contact, nurturing voice, touch, and eye contact will result in the establishment of rapport with nearly anyone. While my counseling process has been highly successful, it is in no way applicable to people who are disoriented. As I sat in front of Helen on that first day, I thought, "None of the old stand-by techniques will work! Find something else to try!"
My first resource was Validation/ Fantasy Therapy.1 Feil postulates four stages of progressi ve disorientation. No one individual will exhibit all of the characteristics of a given stage. These characteristics are used as guidelines for intervention and not to categorize. From the following characteristics exhibited by Helen, I determined that she was predominantly in stage three. Repetitive Motion. Someone in this stage: 1) Repeats one of three sounds over and over - Wha-whata-wha (sounds like water), way way way (away), or babababa (bye); 2) These utterances, for the most part, are unintelligible. Voice tone is loud and shrill during these times; 3) Crying frequently accompanies these perseverations as does drooling; 4) Eyes clear but often unfocused; glance is usually downward, but occasionally gazes into the distance; 5) Face and body muscles are tight; 6) Movement of head and hands in space is slow, indirect; 7) Does not initiate speech; answers in monosyllables; speech slow; 8) Short attention span. Cannot focus on more than one person or object at a time; 9) Cannot write but can read. 10) Is incontinent of bowel and bladder; 11) Breathing is shallow but steady; 12) Arm and neck muscles well-developed from pulling on tray of chair and bedrails; 13) Is restrained at all times, either in a geriatric chair or in bed; 14) Slowly folds and unfolds scraps of cloth and paper when available. Repetitive motion is a "retreat to basic pre-language movements and sounds which the individual employs to nurture him/ herself The individual no longer uses words. He/she gives up communicating."1
Seeing a relative in the disorientation stage of repetitive motion, with its seemingly purposeless utterances and movements, can be unsettling to family, friends, and nursing staff. One of my initial observations regarding Helen was that at times she appeared to be "spaced out. " Her eyes would not focus and she would drift in and out of sleep while sitting in her chair.
Review of Helen's medication chart revealed that she was heavily medicated. Sedatives and tranquilizers (C2 Pentobarbital, Haldol, and Thorazine) were administered daily. Drugs are a way to control undesirable behavior, and in some cases, perhaps the only way. Butler and Lewis state that we are an overmedicated society; that we seek instant gratification and that much of the medication administered is not for the welfare of the patient, but to calm the fears of family members and staff.2 Furthermore, Hicks, Funkenstein, Dysker, and Davis caution that the elderly patient is more likely to be sensitive to drug effects.3 In addition, he/she is more likely to suffer from adverse drug interactions because of the likelihood of multiple medication. It became my personal goal to see what, if any, intervention I could improvise that would reduce the amount of PRN tranquilizers administered to Helen.
To realize my personal goal for Helen, I needed to create interventions that had not been tried. I had learned from several nurses that nothing seemed to work for any length of time. At this stage 1 knew what didn't work, mainly drugs and restraints, but I did not know what would work. I began to explore Pathways to Hearing.
Pathways To Hearing
I Am Not In This Alone - The institutionalization of an elder family member is particularly stressful for the family as well as the individual. The nursing staff, aides, and Helen's husband became important resources for me. I spent time each visit explaining what I had tried, what seemed successful and what hadn't worked at all. While most of the staff were reserved, they were also supportive.
The Message Of Music - Throughout the ages the therapeutic value of music has been recognized. It is mentioned in the early writings of the Chinese, Greeks, Egyptians, Persians, and Hindus,4 Specific music has been connected to a relaxed and passive state. Largo Baroque instrumental music of the 18th century is thought to be especially suited in placing the individual in a state of relaxation and meditation.5 Pachelbel's Canon in D is an excellent example of Largo Baroque. I had used Baroque music with another resident at the nursing home. This music had enabled this individual to obtain a better sense of balance when she walked.
Upon observing Helen for a period of time, I noted that the repetitive sounds had an established cycle. It would start as a low moan, build to a peak and then subside. The pause between cycles would be approximately two minutes. Since my voice or presence seemed to have no effect on her cycle, I put the Baroque music tape on. For ten minutes no difference was noted. Slowly, I began to perceive that her voice tone was lower, not as shrill. I tried pacing Helen with the music.
Pacing is a fundamental technique of Neuro-Linguistic Programming.5,6 Essentially pacing is matching a person's verbal or non-verbal behavior. In Helen's case, I matched the volume of the music with her wailing. The results startled me! Within five minutes of continual pacing her repetitive sounds slowed to the point I could understand her sounds. What had previously sounded like "water" to me and to the nursing staff, was actually "I don't want to!" From that moment on, music became the foundation of our relationship. Sometimes it was the only communication we had; other times it was the background for other techniques. It certainly was the springboard for relaxation and guided imagery I used next with Helen.
Relaxation/Guided Imagery - Relaxation is therapeutic in reducing tension and anxiety. As noted, Baroque music can induce relaxation. Helen began to respond more and more to the music. Her cycles of moaning were farther apart and she appeared calmer. I needed to go beyond the relaxed state. In a relaxed state, the mind is more receptive. If I took away the repetitive sounds, which in her state of confusion she nurtured herself with, I needed to replace that void with an effective coping skill.
The technique I utilized was guided imagery. I designed a guided imagery tape especially for Helen which I had the staff play for her at least once a day. I employed the principles of Superlearning: Baroque music as the background and paced presentation of the material . Madsen found that the pacing of presentation seemed to act as a resynchronizer for out-of-synch internal rhythms.7 1 reasoned that a possible contributor to disorientation is out-ofsynch internal rhythms: If the music relaxed, and the pacing synchronized, then the disorientation would lessen. The material presented was also important. It was designed to build self-confidence through the use of affirmations. I knew it would take time but would lessen her periods of agitation for which she was medicated.
Validation/Fantasy Therapy - There is a reason behind all behavior. Helen's wailing and rocking were her means of communication. Feil believes that the best way to help the disoriented is to acknowledge the reason behind the behavior; to validate the feelings of the person, to say that their feelings are true.1 The fantasy is a personal view of the world. I believe Helen viewed her world as restrictive, that is, confined to a geri chair or bed with constant restraints. I believe her feelings were of anger, rage, abandonment, and helplessness against the advancement of multiple sclerosis. My most effective reply to Helen's "I don't want to," was "I know you don't want to Helen." At every opportunity I tried to understand the feelings behind her behavior and to validate it. I was not always successful. Sensory Stimulation - We use all our senses to orientate ourselves in our environment. Sight and hearing are, for most individuals, the predominant modes. However, olfactory, movement, and touch are also important. Helen uses sound and motion (rocking or pulling) to communicate, to nurture herself, and to stay oriented in her world. Sensory deprivation in one or more of these channels and with no compensating coping mechanism can lead to possible physical and mental disorientation. This condition in adults is called recognition-hunger.8 Berne believes that recognition-hunger is considered by many to be as important to survival as foodhunger. Therefore, we need sensory stimulation to survive.8 I then began searching for ways in which to stimulate Helen's senses.
a) Auditory: Voice and music are important auditory stimulants. In addition to the Baroque music I played for Helen, she was visited once a week by a music therapist. When not heavily medicated, Helen would usually listen quietly to the music therapist. However, the use of a radio did not produce the same quiet periods which suggests to me that it is not the music but the human contact or familiar voice along with the music that reaches Helen.
b) Visual: Sight is an important orientating device. I made sure Helen had her glasses on each time I was with her, even when she was in bed. To further stimulate her sight I wore colorful clothes and took her for rides outside.
c) Olfactory: To provide olfactory variety, I would wear perfume, pick flowers for Helen to smell, and gave her a bottle of perfume to smell. Having her smell was the first reciprocal interaction I had with her. I would say "smell the flower Helen," and she would lean forward, sniff and say "Nice." It was a welcomed relief from the monotony of "I don't want to" or "away" or the answer "yes" or "I don't know. "
d) Body Language: Ninety percent of the communication between Helen and myself was non-verbal; we spoke with our bodies. Communication experts claim body movements and postures are clues to inner behavior.9 Ekman and Friesan believe that of all facial features, the eyes probably send the most accurate message. ,0 Helen, when she so desired, would maintain eye contact with me. Her large, dark brown eyes would penetrate, consume me. During such times she would not perseverate. When she perseverated, she would look down to the right, which Grinder and Bandler say accesses the kinesthetic mode or feelings.5 I was shut out from Helen's world when her eyes were downcast! To regain access to her world, I used tactile stimulation.
e) Tactile Stimulation: Touching is essential to healthy development. Studies have shown that infants touched only in a care-taking capacity, frequently died." The belief is growing that as adults, we sometimes suffer from a kind of emotional marasmus: the society we live in places less importance on touch than on other, less immediate senses such as sight and hearing." Yet touching is the most primitive form of communication. Touching communicates caring and implies a commitment to the other individual. 12,13 Because our society, through norms, regulates touching, a condition called skin-hunger develops. We learn to substitute words for physical contact or when physical contact is required, do it in a care-taking manner. Indeed, residents of nursing homes are touched daily but too often only in service of their physical needs. Individuals need more than care-taking gestures. Not only was I in close physical proximity to Helen when with her, but I was also in constant contact. While massaging her face I realized that she had made space for me in her world. Gone were the lines of anxiety and tension, replaced by serenity; gone were the years of anguish and the ravaging of disease; the inner glow of a beautiful woman warmed my being. Touching is so simple, so often overlooked.
f) Fine Motor Skills: The last sensory stimulation technique utilized with Helen was manipulation of objects in her environment. When I was with her, I would insist she feed herself. Brightly colored pieces of cloth and paper, a tennis ball, paper and pencil; clay, and bubble solution were provided for her. All these items: music, rides, perfume, flowers, eye contact, touching, manipulation of small objects, were designed to stimulate Helen's interest in her surroundings.
Representational System - Grinder and Bandler state that there are three major input channels by which we receive information about the world around us: vision, audition, and kinesthetics.5 While we use all three, there is a preferred represential system. To access her vision channel, I started writing one-sentence messages then holding them for her to read: Hello Helen; My name is Kathy; I am your friend; I want to help you; (The last message brought tears to her eyes and she cried; not the wail of before, but sobs.) I know you hurt; I am with you; hold my hand.
Helen took my hand and for the first time returned the pressure of touch. Helen spoke my name for the first and only time: "Why, why, why, why, Kathy, Kathy, Kathy," I replied: "I don't know why, Helen, I don't know. . . ."
Our last time together was one of joy and sorrow. I had been preparing Helen and myself for the fact that I would no longer be working with her. On our last day, I gave her a card. The card said, "Thank you for being my friend, Love, Kathy." She looked at me and cried. I cried. I held her . . . or was she holding me? When the intensity subsided, I said: "I must go now. Goodbye Helen. " I leaned over to kiss her cheek. My inner voice was screaming: say something to me Helen, please say something! Have you heard me all these weeks? As I stood to go, Helen said in a faltering voice: "Thank you for being . . . ."
Helen and I traveled a great distance in the eight weeks I knew her. She was my friend and teacher. In terms of her adult development, I'm not sure what we relived. I would like to believe, through the Pathways to Hearing, I helped bring meaning to her nursing home existence. The staff shared observations with me regarding Helen's behavior during the time I worked with her: 1) Helen is quieter; does not perseverate as often nor as loudly; 2) Appears more alert; watches people around her; 3) Feeds herself more consistently; 4) Responds verbally more frequently and coherently; 5) Sleeps the entire night; and 6) The administration of Thorazine PRN was reduced by half.
Two weeks after I completed my counseling internship at the nursing home, Helen failed to recover from a seizure and died.
While this paper has highlighted the successes, there were many times I was frustrated, angry, and discouraged both with Helen and myself. Many were the times I silently willed her to be quiet so I might separate our realities. Yet, compassion laced generously with stubbornness and a dash of hope lead me to find the Pathways to Hearing.
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