Concerning Alzheimer's Disease

A Case Concerning Alzheimer’s;

It will take more than drug therapy

About My Work With Alzheimer’s Disease

In 1964 I did an internship with OPICA, a day care center for the fragile elderly, located in Los Angeles, California The most severe cases among the clients were those who suffered with Alzheimer’s disease and other forms of advanced senility.

It was the job of the OPICA staff to care for the clients with gentleness, food and activity appropriate for their condition until the evening when the clients would be picked up by family members or other care givers.

Of course no-one, not there nor generally anyone in the mental health field, knew how to treat or deal with such a client when he or she became agitated and started to act up, since the central feature of the condition is that the focus of attention of such a client is simply not on the so called normal plane of here and now, present time, communication. Nothing the client says or does seems to make sense, nothing the person trying to aid the client says or does seems to register with the client.

This state of the condition still exists everywhere.

All the OPICA staff could do was to try to distract the client’s focus away from whatever it was that triggered the onset, and to calm and comfort the client. I must say that the staff at OPICA, gentle and professional, did a very good job of this.

I think that before I proceed with the story about Alzheimer’s it is important for the reader to understand what it was that facilitated the success I had with dealing with the problem.

Subtextual Listening (STL)

The art and science of what I call sub-textual listening, STL, - the art and skill of hearing the motif that lies underneath the words, phrases and behaviors the client expresses - is critical in such cases; actually STL is critical for all approaches of psychotherapy and, indeed, should be for all practitioners of clinical psychology including psychiatrists.

Learning to listen

When I joined the staff at OPICA, people quickly learned that I had a developed ability to listen deeply to others. Although the ability to so listen is inherent (just watch very young children keenly focus on someone near who is showing distress), it is typically and rapidly repressed because people are typically conditioned not to listen quietly, objectively and patiently to one another, and especially not to young people.

One has to relearn the natural skill, which, because it is inherent, generally comes back quickly. I was very lucky to get into a program in 1970 in which keen listening was taught, learned and practiced as part of the larger purpose of achieving enhanced skills of psycho/emotional counseling.

The kind of listening this involved required commitment to the following few principles:

The discipline to put aside one’s own subjective and reactive thoughts, feelings, biases and judgements.

To clear one’s mind as it were, so as to let in who and what the client is; what he/she is saying, his/her tone and temperament, thought processes, emotionally emitting, behaving and doing in terms of body-english, unconscious gestures, facial and other physical expressions.

“Letting in” such stimuli when one’s subjectivity is suspended allows the information to percolate deeply into one’s (the listener’s)intuitive and human experiential resources, which we hold in common with every other human being. That is, we all deeply know what grief is, what fear, anger, rage, humiliation, rejection, boredom and physical pain, and all fundamental levels of human distress are. We have all experienced these traumas at our most tender ages, although for the most part we can’t consciously remember most of them.

Equally important, we all know what indignation is: the urge to react to oppressive treatment or circumstance, to stop it and make the situation right and fair. How often we tried to do this before the stronger or larger forces so treating us simply wore us down into conditioned hopelessness, or powerlessness, or into defensive and idiosyncratic ways of escaping or evading (addictions fall into this behavioral phenomena).

In short we all want to solve the problem, heal the trauma and recover the ability to live fully. Even the person who escapes through suicide does not truly want to end the gift of life, but rather the hell of living in pain.

Equally and crucially important is that we all have the inherent power and natural healing bio/psycho/emotional mechanisms to recover healthful and balanced stasis to live successfully. These inherent mechanisms work well when given correct, effective and committed support, and the time to fulfill such recovery (the kind of assistance that the profit-before- people insurance industry will not typically cover - it’s the system, isn’t it?).

How does one set aside one’s subjectivity in order to listen well to another? By deciding to do so; by deciding to decide to do so over and over until it becomes easier to do so. To decide that another person’s life and state of existence is as precious as one’s own - surely real listening and caring must make this so, or else one is just faking it for whatever personal aim one may have.

To be patient in letting in the information until it begins to form some sense in the listener’s intuitional realm.

Once you have created a connection between the sensate being - the one you’re listening to - and yourself, that sense will always come. You and the client are then on the same page. The client now senses you are tracking well with her or him, the trust builds, he or she is eager to respond to you.

Then you think about what you are sensing. You think about what the information means underneath the words and behaviors. What is it that the client is trying to say or to get at? Usually what people project is really a clue to their subjectivity. To give a simple example, if a person regularly laments how ugly or stupid others are that person is probably talking about how he or she was made to feel about her/himself.

Formulate all the interventions that will open and further the client along towards self-understanding and recovery.

This could be facilitating questions “Were you made to feel ugly or stupid? How? Who did this to you? And before this who else? Who was the first, or what was the first thing, you remember that made you feel like this? Were there times you felt beautiful or smart.” The further you take the client to the core of the trauma, the closer to the “explosion” (as Gestalt theory would put it) and to the insight that further frees the client from the grip of the trauma.

This could be the phrase and/or action that contradicts the chronic self-invalidation the client had to internalize by force of the oppressive treatment. (E.g., “I am not ugly, how dare you make me feel that way! I’m a beautiful human being!”)

This could be the symbolic re-enactment and role playing of the circumstance that installed the trauma, and supporting the client to ventilate all his/her thoughts and feelings the client felt unable or unsafe to let out sufficiently at the time. (This requires very special skills on the part of the listener, and careful attentiveness to the client’s ability to handle the process).

This could be behaviors that intervene the rigid behavioral habit a person had developed, that puts the client on a path of productive and “normal” functioning.

There are many other approaches being used, as well. Professional counselors, many of whom are good listeners, use many approaches in helping their clients. I think it best to have an eclectic base for one’s approach, because every person, every client, is unique, and the counselor is most effective when he or she is able to respond in a way that fits a given client, the complications of his/her material and the ever changing nuances of the process.

In any case, a listener, professional or lay person, is able to be more effective when he or she is able to listen in an STL (sub-textual listening)way.

Persist in the intervention(s), tracking with the client’s output and flexibly melding with the turns and twists that may occur as the client opens more and gets deeper into the material.

Paying attention to what is working, or not working, and being able and willing to shift gears in response to what and how the client is producing is critical.

It does no good, and ultimately installs distrust, when the listener insists on a certain tact and the client shuts down, or “goes along” in a sudden disinterested way, or desists in cooperating at all with the listener’s intervention.

Other factors that generate STL are in the state, attitude and relationship the listener creates between him/herself and the client: commitment to the well-being of the client for as long as it may take; genuine respect for the humanity and belief system of the client; non-judgementalism of the behavior or physical/mental- emotional state, nor of the personal identity, or history, of the client; compassion and empathy for the client regardless of the listener’s biases; equality of the client regardless of her/his station, stature or circumstance, and willingness on the part of the listener to take a “one-down” position when there is a sense of powerlessness coming from the client.

Back to OPICA an the Alzheimer’s experience

There I was on the job, helping to provide care for the fragile elders. As I said , the staff learned that I had this special ability to listen patiently and calmly to our client’s, when they became agitated.

When any became particularly upset the call went out for “Jack! Where’s Jack?” Two cases especially come to mind.

There was “Edna.” Edna was diagnosed with Alzheimer’s. Edna often acted up when she sat down to table for lunch. Most often her upset was mild enough for almost any of the staff to comfort Edna and get her through the meal. One time, though, the upset was severe and the call for “Jack” went up. I was able to drop what I was doing and came to the table. Edna was very upset, the staff was upset.

I said to Edna, “Let’s go eat over there where it’s more private.” I don’t know if she understood me, but apparently she understood the gentle urge I placed on her elbow to come with me. We sat in the private corner. I brought the rest of the sandwich she had started. She didn’t pay attention to that. She sat, her eyes wet with tears and glazed as she stared as if into a distant time and place.

I sat with her quietly for a time. Then I asked the obvious question, “Edna, what hurts you at the table?”

Her eyes lit up with recognition. She sensed someone was finally tracking her focus of attention. She turned to face me directly and spoke, “He hits me...he hits my hand with his knife.” she said.

“Why does he hit you,” I asked. She answered, “You never use the right fork, you’re so stupid.” There was a pause. I searched for the next thing. “That is so mean,” I said. Edna said “Daddy is always mean to me when we eat.”

It was a revelation. Edna was back there in her childhood, she was completely lucid and connected. She had someone who understood her and was there with her. None of the “symptoms” of of incoherence were present.

She began to cry voluminous tears, an indication that the decades of hurt had begun to discharge, that is, to detox her neural system of the ancient bad chemistry (the adrenalin, steroids, norepinephrine, cortisol that the trauma had triggered and which had become chronically embedded in her system - for lack of proper, timely attention and support for ventilation and detoxification.

She went on to tell me the times she was so abused,” Every time we eat, every time we eat he hits me. He tells me I’m bad, bad, bad.” She spoke in present tense, because that’s where her focus and fixated preoccupation was. We all experience this to some degree, consciously or unconsciously, in order to get at the hurt and get it out - detoxify it. It is the reason so many of us repeat our story over and over until, hopefully, some one pays enough good attention.

“Why does he call you bad, Edna?’ I asked. She replied, “He says good people learn manners at the table. You never learn, you’re stupid and bad.”

The next fifteen minutes were reiterations of the same sort of oppressive abuse.

“Do you tell anyone how Daddy treats you,” I asked. She said “Oh no, I shouldn’t.”

“Why not,” I asked. “Because, everyone would know I’m bad, it is so embarrassing,” She said. At this a new gush of tears came.

I waited until she caught her breath. I took a leap, ‘You’re not bad, Edna.” “I’m not?” She seemed surprised. “No, you’re not and you’re not stupid, either.” Again, incredulously, “I’m not?,” she barely whispered. “No, you’re not,” I reassured.

After a pause while she seemed to be trying to figure this out, she said “But Daddy says I am.”

Then I paused, trying to figure this one out. I didn’t want to risk stretching her credence too far by telling her that “Daddy” was actually acting out of the way he was treated when he was a child (this is, indeed, an example of the compulsive perpetuation of chronic distress conditioning, from generation to generation).

So finally I decided to “reframe” the hurtful circumstance so as to bring a sense of relief to her psyche, her self-identity. I said, “You know, Edna, I think Daddy loves you very much and that he is just trying to teach you things that would make other people love you to. He just doesn’t know the best way to do this, because no-one taught him how. But he was just trying to inspire you.”

This was a pretty big thing to grasp. But the light of hope crept into her eyes. She said “You think so?” “I really do, in fact I am sure of it, Edna.”

Smiles and tears followed. And glances into my eyes to assure herself she really heard what I told her. I held her, gently, for a minute, then I released her. She got up and went to the lunch table. She stopped, turned to me and reached out cupping her hand, as if she wanted something. I remained in an awed state a moment and then I remembered I still had her sandwich. I went to her and gave her the sandwich. She smiled and sat down to eat.

Edna and I had several sessions similar to this one after that. Her behavior at the table improved, but not by a long shot was there a “cure.” There was a way, however, of connecting with her and making sense with her, and mollifying her torment.

I had similar sessions with others who were suffering from Alzheimer’s. Another special one was “John.” Almost everyday at the same hour John would become very agitated and go up to this one and that one with the same frightened question, “Where is she, where is she?” Sometimes he left the building and someone had to go after him and bring him back.

No-one knew how to respond to John, they didn’t know what he was talking about. He was repetitive and almost robotic in his state. I took on the job of trying to reach John.

In much the same process I used with Edna, we discovered that when he was young his mother had to leave him repeatedly, very often around the same time of day (perhaps for work) and sometimes for long periods. The distress of abandonment and the internalized schema in his mental processes became that he was not worth “mother’s” time and protection. This became a chronic trauma which had entrenched itself into John’s neural system.

I made some progress with John. I discovered that sometimes “mother” left him alone, and sometimes with others who were neglectful and distant in their treatment of him. Through the process of tracking on the same page, and time frame of his life, that John was fixated on, and the process of shedding the toxic material through his discharge; reframing his schema, John made enough progress to reduce his agitation enough so that he could respond to the warm comfort of the staff and no longer needed to wander away into the streets.

Through these cases I came to some important understanding of the condition we call Alzheimer’s disease.

First, while there is indeed neural damage and cell loss to the brain caused by the condition (it is all that bad trauma chemistry that does the damage), it is also true that other brain structures take over and compensate for loss, provided that the loss has not migrated too greatly and that the other structures are also not too damaged.

Secondly, as it is always the case, when a listener gets on the same track of the attention focus of the client, regardless of what the focus is and what stage of life that focus is on, the client becomes responsive and communicative at that level, and thus able to make progress.

Thirdly, in the case of Alzheimer’s the trauma is so intense and chronically entrenched that it would take many, many hours, over months, perhaps years, to restore basic present time awareness, self care and functioning - in one who suffers the condition. Medically and in our research we do what our resources allow, but as a society we have not yet evolved sufficiently - our system, our insurance system and medical culture is antagonistic towards such requirement and demand. Even our familial forbearance and fortitude, so typically strained by trauma, distress and financial burden, seldom can sustain such commitment.

(Nancy Reagan is the exception. Of course, there is sufficient wealth and resources there to allow the support she apparently gave to her husband. I am not sure what her future will be like, now that he is gone. It could be positive if she were to take on a campaign for Alzheimer’s control, prevention and perhaps cure, or other such purpose. Who knows what strength she has left?)

Fourthly, I brings home to me even more forcefully the general and serious lack, in society and in the mental health field specifically, of the ability to be quiet long enough and to listen - intently in that STL way - so, as it were, to connect with another, to be in the other’s shoes; to allow the experience of pain to rise to the surface sufficiently to flow out, uninterrupted, in its full measure.

This ability, though inherent, is typically shut down early in our lives because of the oppressive culture. On the professional level it is the responsibility of our training institutions and programs to raise their awareness to this, and to initiate serious programs for retraining students and professionals in the critically fundamental art and skill of listening.

It is important for training institutions, teachers and students to understand and accept that the most effective counseling and therapy skills will come out of the experience of being counseled. This means going far beyond the surface sort of practice counseling typically done in psychotherapy and psychology classes. It means in depth counseling at least for the full course of training, and, hopefully, maintaining a regular regimen of personal counseling in one’s professional life. The rewards for one’s self and one’s clients are enormous, and “burn out” hardly ever becomes a problem.

Addendum

How can a person with such early and persistent trauma do well in her or his life before falling prey to Alzheimer’s? We are born typically with 100 billion smart neurons in our brain system. This give us a vast amount of slack to absorb hurts and yet keep functioning. We see this is young ones who will encounter some oppressive or other hurt, be stunned for a while then bounce back to what seems full capacity. But the effect of trauma mounts up.

Over time, and over repeated experiences of hurt (similar hurts to the original trauma will add weight to the damaging effect of the hurt), the triggering of the “fight or flight” chemistry: adrenaline, norepinephrine, steroids, cortisol and the like, adds more erosive chemistry to our system when we are not given timely and proper support to discharge and detox the chemical effect of the trauma.

We are typically not given such support because of the social conditioning against listening and detoxification (the surface mechanisms of detoxification are talking, screaming if the fear is intense, crying tears, shaking and sweating, tantrumming (you’ve seen babies, kick, pound and sweat with frustration have you not?), laughing, sighing, yawning, stretching - all vertebrates, your pet dogs and cats, your children do this, naturally, in order to release the effects of the tensions and the trauma.

So, disallowed to discharge and detox the effects of lifetime hurt, over time the pile of erosive chemistry, stuck in a chronic state, eats away at the tissue and cells of our nervous system (and all our organs and muscles) destroying our capacities, our strength and vitality, ultimately our brain’s capability. We are left still stuck with the memory of the original trauma, by now preoccupied with it fully, yet still, like Edna and John, striving to get it solved.

Since all people, in the oppressive way society operates, suffer early hurts and psychological trauma, to one degree or another, and since hardly anyone receives the sort of support and listening talked about in the foregoing, why, one may ask, do not all people end up suffering from Alzheimer’s or other severe forms of senility?

Each person is unique. Each person’s experience, while so many factors of human experience are common to all, is unique in its ultimate shape. Each person’s psychological profile is shaped uniquely. The severity of our psychological patterns vary from more mild to very intense. The medical field has invented labels for people’s distresses or, as they say, disorders, as a way of trying to approach and treat the problem.

One person may develop depression, another chronic aggression, another manic-depression (bipolar), another obsessive or obsessive-compulsive behaviors, another borderline disorders and so on. It is typical to hear students exclaim in psychology class as they learn the descriptions of these patterns, “Oh, my God, that’s me!” This almost always produces laughter. Laughter, often, is the tip of the iceberg of grief and fear.

It is a good idea, despite all the sincere denial out there, for everyone of us to seek out regular good - STL - listening to relieve our distresses, and to learn good listening as well. Our lives would be healthier, happier and more fulfilled, not to mention how society would be changed into the kind, fun and loving place we all wished for as children.

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