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Post-Awareness Stage 6 is without description (The Caretaker).

The Caretaker has decided to leave the final stage without description. Either this is out of respect – considering the weight of the final ten minutes, and their possible meaning (death and terminal lucidity seem to be the most prevalent interpretations among the listeners), or, everything has already been said; just as we’ve run into the same issues from different angles, so the descriptions for each stage have been denoting the same issues.

In the end, we know very little about Alzheimer’s Disease, the most important being that it is a progressive, fatal, and very personal disease. Briefly explaining the first interpretation, death or terminal lucidity: Death would be implied by the choir, which according to some listeners is a choir at a funeral, or angels receiving the patient. I side with the terminal lucidity explanation, as it seems to stand more in line with the rest of the project. As the entire project consists of memories, and on Stairway to the Stars there is the same track “Friends past reunited”, which sounds nearly exactly the same (a bit more reverb in the original), a final, fatal, moment of lucidity, seems more likely. Terminal lucidity, is, however, still a too complex problem for this study, and would deserve a work devoted to it entirely.

We would not be writing this if we agreed with the second interpretation – not everything has been said. So we’ll have to risk trespassing this respect and argue for a new interpretation. The lack of description seems to invite us to do so. There is a solitude for the patient, a world that does not seem shared anymore (to either party). We, however, argue that this is fundamentally impossible, as the shared world remains, always, an ontological presupposition – the suffering seems to emphasize the primordiality of this sharedness: the fact that we are looking at the same person as before the disease, but they do not seem the same anymore is in itself cause for suffering.

Stage 6 consists of four tracks, each of which accentuate this solitary passage towards the end.

The first track of each stage is simply “Stage #”, with the other three in Stage 6 being: “A brutal bliss beyond this empty defeat”, “Long decline is over”, and “Place in the world fades away”. As the “music”

itself consists of long, drawn out chords and other sounds (drones), this is technically the easiest stage.

Empathy is not a problem here, either: the bliss-state, the emptiness, the peace after confusion and before death is not uncommon in the dying. After the intensity of AD this is easier to empathize with – we can see the peacefulness in their glances, which, however empty, are better than the horror before.

In this, we see yet again the importance of the past, the narrative, and the context, when it comes to empathy. Even in cases as extreme as this, radical empathy looks only at the present

perception, in which we can actually see that the world is not shared. We can see the confusion, the horror and the sadness in the patient’s gaze, implying that they see the world radically different from us, but they still see the world. To put it in more musical terms – the patient hears a different song than us. The noises we hear, the terrifying sirens in Stage 4, the static in Stage 5, they are all musical pieces from a time past – from the narrative, which we can still reconstruct, and have to, if we wish to make something of the remaining future of the patient. In this it is important to recognize a distinction between the concept of empathy we are using, and the ideas on the Self. The minimal Self always contains a first-person perspective (the what-it-is-like-for-me), upon which the narrative Self can be built secondarily. In empathy, however, we are always aimed at this perspective of the Other, without knowing the content. In short, empathy is by nature radical – there is never an assumption at the foundation of recognizing intentionality. However, in actually radical cases, the context of this intentionality becomes more important. Instead of dropping the idea of a shared world-horizon, we need to hold on to every shred that is still shared. If the person we are trying to empathize with is themselves no longer capable of forming their narrative, of creating a social, sensible Self, then we can only prevent their isolation by realizing that this person, who is now but a husk of who they once were, still has a past, a narrative, and a social aspect. We simply cannot demand of any Self that they can be fully defined in isolation.

In a way, all of this is symbolized through the idea that EATEOT consists of fragments of the same music. Even though the experience of the music is vastly different, the music itself is not – there is a shared life-world at the foundation of experience. Within this shared life-world is a Self, which is not entirely subjective either. Almost as if the shared life-world colours the Self the same way as the pre-reflective schema’s colour consciousness, it influences us in the fact that a Self is not entirely self-contained. There is a narrative aspect to it, which is, by definition, social and shared. It is this social element that we should not lose sight of, as this might become our only connection to someone with AD, without taking recourse to radical empathy.

It is in this sense that empathy and the schemas are similar – the Self is not isolated, and thus, coloured by Others, coloured through empathy, through the fact that it is seen as a Self worthy of care, attention, and sharing. We’ve now explored the three realms we mentioned in the beginning (body, temporality, empathy) and found that all three are inseparable. We can say of the body that it is the first, and principal actor in the disease, in which clear, physical, changes alter consciousness.

These bodily changes affect the reflective level of consciousness (as the body simply is pre-reflective), meaning that our schemas, which colour our experiences are altered. While temporality is not the same as such a schema, there is a mutual relation between them. We do not have clear evidence that AD changes temporality, but we can state that the changes to pre-reflective schemas change how we experience time, how it makes the past flow (or rather burst) into the present. It is here that the patient becomes dependent upon empathy – if they cannot make sense of the world anymore, how are they to still count as someone partaking in it? As stated above, it is through their narrative, social Self, that they remain human, and linked to the shared world in which we (and they) live.

As we are technically listening to the same music as the original, only through a different frame of experience, the only thing that can have changed is the salience of said experiencing – much like the traumatic colouring of dog-experiences – the only thing that we can argue to have changed in the experiential framework of the patient, is its pre-reflective, mysterious, silent, flowing realm of schemas that define the “how” of our experience. In short, the “what” of experience remains, while the “how” is radically altered. This might seem counterintuitive, as the patient falls back on primary needs (warmth, safety) in the later stages (Kollaard, 137). If the pre-reflective schemas are altered,

how are these needs still experienced the same as before? How come that these experiences are not altered by the distorted flow? For this we need to make a very bold suggestion: not all life unfolds time. Temporality is seen as a purely human essence, however, lower animals and vegetative life also have needs requiring fulfilment. Perhaps these primal needs function the same; requiring no salience, never coloured differently: hunger remains hunger.

Conclusion

In this thesis we have studied a few experiential aspects of Alzheimer’s Disease through a musical work. Instead of giving a physical, empirical account of the bodily malfunctioning and the care needed because of this, we have opted to look closer at the experience of the patient; how the world stops making sense, and how a caretaker might be able to empathize with such a radically different experience of, essentially, the same world. EATEOT has shown us, through our phenomenological lens, that it is possible to empathize with a patient, perhaps even understand them. By using core phenomenological approaches and theories, we have shown that the experience of an Alzheimer’s patient is not of a different kind, as a radical account might state, but that it is only radically different in its content, due to the patient’s physical malfunctioning.

The link between empathy and music seems an intuitive one, but remains vague. However, the combination did put emphasis on the pre-reflective level of our being – a level sometimes overlooked when distinguishing human being from other forms of being. Especially in cases of mental decline it is important to realize that strict delineations, while romantic, more often than not, apply to a fairly limited number of cases. We’ve seen that our capacities to live “authentically”, to deal with our freedom in the face of death, while motivating, cannot always be held. Though we have deemed these theories too demanding, they are not too far of the mark – they all deal with human consciousness as separated from other forms of consciousness, they all deal with the link between this consciousness and “the world”. What made them too demanding was either their holistic, or too individualistic character. What is needed is not a more radical reduction, but simply the recognition that we are never alone. The world is primordially a shared world – a world in which the recognition of Others happens just as automatically as recognizing one’s own body. Just as the world is given to us, so the Others inhabiting that world are given to us, together with their expressive bodies.

This givenness is partly due to our inherent capacity of transcendence, our ability to direct our intentionality towards objects “outside”. In music this becomes apparent through the unity of the melody, in empathy through spatiality – seeing the emotions of the Other. This inherent capacity, then, was a result of a primordial flowing – the flow of temporality, meaning that transcendence was either one of simultaneity (in space) or of succession (in time). Through music we’ve been able to argue for the permanence (for lack of a better word) of this flowing, meaning that, although different, this essentially human aspect of conscious life, remains in the AD-patient.

This was not sufficient, though. Another important aspect of this musical work, was that it was created by someone without AD, meaning that an evocative work, reportedly reminiscent of AD, can be created by an outsider – someone who can only emphatically create such a work, for they are not experiencing it themselves. Even though the experiential framework of the AD-patient is radically different from a healthy framework, it is still possible, and still primordial, to empathize with them. In other words, we need not relinquish our faith in the world in order to empathize with a seemingly different kind of consciousness, for, it is not a different kind, only its content is radically different.

If the patient, then, still has the same kind of consciousness, but a different content, what causes this difference in content? It cannot be a different world, as we’ve abandoned the idea of this possibility – the world is primordially shared. It can then only be traced back to the pre-reflective schemas that “colour” our experiences. This is also where we ran into trouble: we are stating that the unfolding of time happens differently, but also that the pre-reflective schemas have changed. Time does not unfold through such a schema, so we’re stuck in a chicken-egg conundrum: do the schemas change due to the change in flow, or does the flow change due to a change in these pre-reflective schemas? We know time does not unfold through a schema, but it is equally unlikely that the changed

schema does not involve a changed experience of time, as we have clear evidence that the disease is physiological – there are proteins, and there are neurons dying. On top of this, we know that the patient will slowly regress towards pre-personal, bodily needs, implying that all other things no longer carry any meaning for them, which can only be due to those changed, fickle affective schemas also discussed by Ratcliffe.

If we return to Heidegger’s terminology, which is surprisingly fitting, then we could state that the patient’s way of taking care of the world has changed – their flow has changed into a torrent, causing their interaction with the world to become equally chaotic. With this chaotic frame of experience, one can hardly call their interactions care anymore – the world has stopped making sense the way it did, and the new way of “making sense” is one which makes individual life impossible. This is where empathy becomes important, and why Heidegger’s terminology is so apt; due to the regression of the patient, they become increasingly dependent on an Other’s capability of taking care, of reckoning with this given Other who is clearly suffering. This intersubjective sphere of empathy is one we cannot deny in discussions on the Self – as Zahavi already stated, the Self is just as much found as made. The Self is social, as well as minimal, and it is impossible to state which of these is primary, or more fundamental. In most cases, both of these are united. However, when a disease as Alzheimer’s develops, we see a diminishment first of the narrative Self, and later on also of the minimal Self.

However, the narrative does not disappear, and if we wish to treat a patient, this narrative is all we have, and remains fundamental up to the very end. Sense is never private, for if it were, the world would not be shared, and we would not be able to understand one another. Just as we cannot state that the world is private, we cannot state that the Self is private. Even beyond our end, our Self carries sense for Others, and is partially given sense through Others. Instead of seeing this as a secondary, lesser aspect of Self, diseases such as Alzheimer’s show us just how important this shared sphere of sense actually is. For this reason a phenomenological and empathic account of the experience is important, as a pathological, physical approach to the disease does not come close to exploring these aspects of meaning, experience, and empathy.

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