I have had several striking experiences working with people who have neurological disorders or who have entered a terminal stage in their cancer. In each of these people their disease progression had begun to alter and destroy certain cognitive functions. When this starts to happen it is more difficult for them to communicate what is going on inside and even to stay present to the people who love them and are trying to care for them. The person often appears tired and "out of it." Sometimes I have experienced people looking like they are already in a coma. Usual ways of communicating are often frustrating for the caregiver because there is not much response, or else there may be a response that seems "off the wall" or like an hallucination.
Yet, in these circumstances of physical decline, when I would respond from and to a felt sense level, the person seemed still intact and experiencing in the present. This raises a question about how the 'felt sense' relates to brain functioning and cognitive processing. Let me give you some examples, each of which is an instance of this same point.
A woman in her 60's came to see me reporting symptoms of depression. She said she felt down and would get a stomachache on the mornings when she was to go to work. She said her daughter told her to come to see me because she had noticed changes in her over the last year, such as stopping in the middle of a thought or saying something that didn't relate to the conversation she was having with her. She said her daughter commented: "Mom just isn't herself."
I was aware of what I had been taught about the differences between depression in the elderly and possible indications of dementia. As I spoke with this woman, she could identify relevant stresses; however, the unawareness of the changes in her cognitive functioning and the confusion around why people at work were giving her less responsibility led me to be concerned about possible organic causes. I worked with her physician who authorized many tests and consultations with specialists. This was a very painful process for my client because she was made aware of dramatic deficits in her cognitive abilities of which up to that point she had been in denial.
Fortunately, she had a loving spouse and family who were involved in this diagnostic process and were very supportive. They met with the physicians along the way and were present at the final session when the diagnosis of Alzheimer's Disease was confirmed.
The physician described this meeting to me and commented with concern about this woman's reaction to her diagnosis. The patient was asked if she understood the diagnosis. Apparently, with absolutely no affect she just nodded her head affirmatively. Then the physician asked her how she felt about hearing this. She reported that the patient laughed and said she felt fine about it all. Both the physician and the family experienced her reactions as quite inappropriate and interpreted this as further evidence of the progression of the dementia. The family then began to talk to each other as if my client did not understand what was going on. Her husband even took it upon himself to inform friends of her condition in her presence without her consent and without any sensitivity to what it might be like for her to witness this revelation.
In our next session I experienced something quite different. My knowledge of focusing has given me particular skill in being able to elicit someone's experiencing and I was able to gently ask her about the meeting with the doctor and what it was like. I did my best experiential listening. My careful reflections of each part of what she was saying, I believe, enabled her to stay connected to her 'felt sense' and so she was able to slowly and deliberately describe to me in detail her understanding of her diagnosis of Alzheimer's, including the medical treatments and why. To my amazement it was clear that she had heard and understood everything that was said in that meeting.
I then wanted to hear about her emotional responses to all of this. I tried to create a space that could hold the whole of all her responses. I didn't want to predetermine her reactions by saying something like: "Are you frightened?" Instead, I wanted to help her access her felt sense of the whole of her response. I said something like: "I want to hear slowly from you all that went on inside you as you participated in that meeting with Dr. ____ and your family. Take your time." She began to cry. And then slowly she spoke with great distress about how upsetting this was to her, how scared she was, and how humiliated she felt when her husband told their friends without discussing this with her. She spoke with specificity, going into who these friends were and what they meant to her and why, especially because of who they were, that she felt so devalued by her husband's actions. She began to articulate what she was worried about that might happen in the future. And more, and more. She just poured out so much. She even said that in the meeting with the doctors she didn't want to alarm her family so she acted as if it didn't bother her.
All I did with her was to try to connect her to her "felt sense" level of experiencing. That's all. I was struck by how intact she remained, even with the cognitive impairments that had become more severe over the many months I had now known her. She grasped her situation fully and experienced understandable emotional responses to her situation. She clearly needed to continue to be related to as the whole person she still was, with the assumption that she was continuing to understand what was happening to her, at least at that point in the progression of her illness.
I knew that this woman was very private and reserved. Even before her illness, it was characteristic of her to keep her feelings to herself and not let people know when she was upset. She had experienced a childhood trauma and tried to tell her mother about it, but her mother told her never to speak of it. So really, as she faced into this difficult illness, she responded as she characteristically would. But this didn't mean that she didn't know what she felt or was experiencing. The physician and her family interpreted her reserve and attempt to hide her real responses as caused by her illness.
Because of what I know about focusing I was able to question this woman in that pivotal session in such a way that I elicited her inner experience. I called a meeting with her and her husband and with my support she was able to tell her husband how she really felt about his interaction with their friends. I explained to him how she needed him to ask her about how she was doing inside. These kinds of interventions helped them change some of their communication patterns so that she could continue to express what was going on inside her as she faced into this relentless illness that has no cure.
I heard someone, who is an expert on brain physiology, comment that people with Alzheimer's Disease do not have a soul because they no longer have a self that experiences. There seems to be an assumption about dementia that once certain cognitive functioning begins to go, there is no person in there continuing to have "intact" experiencing. This leads people to change how they relate to such people, which in turn increases the social isolation and may, possibly, quicken the decline.
What I observed in this situation has led me to wonder whether we are jumping to conclusions about what happens to the person and their experiencing. I have read of some Alzheimer's patients who began to paint or draw and this had a positive impact on their symptoms, while at the same time providing an outlet to communicate meaningfully. I am not a neurologist, but I wonder how this works that even as parts of the brain cannot function normally, a self continues to experience and grasp one's situation. Maybe because a felt sense is bodily, the knowledge that is carried this way can continue to process when certain functions go.
She is Now Dying
I had been working with A. for over a year and a half. She was fighting metastatic cancer and she utilized Clearing a Space and Focusing on a weekly basis. There is much to tell about this woman's situation, but I want to talk about what happened when it was clear that she was dying. She had been in the hospital to receive the "last hope" treatment. I had been planning to visit her, but when I called her room no one answered. I tried the Nurses' Station and the nurse's comment was that the husband hadn't been there for several days. I then called the husband and he informed me that the doctors' said that the treatment was not effective and there was nothing else they could do. I told him I was going to the hospital.
When I arrived the door was closed. I walked in, with trepidation. I didn't know what to expect. The room was dark and the curtains were closed. I thought, oh my, now that there is no medical treatment that can save her life, everyone has abandoned her! I walked slowly over to her bed. She didn't arouse. She was lying limp, breathing laboriously. Her mouth was open and it looked like her eyes were rolled back into her head. I thought she was in a coma. I called softly to her and got no answer. I was so overcome with her decline that I sat in a chair and started crying. Suddenly her eyes opened wide. She even sat up in her bed and stared at me with fierceness in her eyes. She looked straight at me and exclaimed: "You're feeling the temporality of it all!" She then, in a sense, came alive again. She talked about how she knew she was dying. I asked her what she needed now and she then began to talk about what it meant to her that she was dying and how she wanted to handle this, including what she wanted to take care of regarding relationships and possessions before she died. She went home the next day and began a very intentional journey into her dying.
What was it about my crying that awakened her? I asked myself this question. Yes, it was an expression of my care for her. But even more, I was fully present in my own bodily experiencing and I was acknowledging the truth of her situation directly in her presence, in contrast to the doctors and her husband. This enabled her to stay connected to her own bodily knowing of the truth as well.
As A. continued on her journey of dying, her cognitive functioning declined even more. For a while, once she went home and began dealing directly with her dying process, she was able to communicate well. But gradually, her thoughts shifted over into almost pure imagery. She would mumble about the images and then would drift away into what looked like a dream state. She experienced a lot of agitation and would just lie in bed with colored pencils and color scribbly lines on paper. At this point, when I would visit her she seemed unreachable.
I spoke with her husband and he described the same experience and he said that he was withdrawing more and more. I encouraged him to talk to her about how he was feeling, what he was experiencing with the strength and intensity that matched his experience. There with him, I supported him in this process and this brought fruit. We could visibly see her "come back" and she would make eye contact and respond with beautiful expressions of her feelings and what it was like for her at this stage of the process. I learned that, although she couldn't initiate communication any longer, that she still was aware and continuing to process her own leave taking, especially in relationship to the people she was close with. What she needed was for others to speak to her from their felt experiencing to connect her to her own experiencing. This way she was not left alone to die. Her husband could continue to feel close to her as well and he was able to say all of what he needed to say before she died.
In all three of these examples, by staying in my own felt sense in the situations and paying attention to the felt sense of the other person, connection and explication of experience remained possible when more ordinary language and cognitive functions were being lost.