I've helped my wife with Parkinson's for 11 years. We were isolated for eight years after a fast, coldly technical diagnosis left us confused and alone. Carers were invited to therapeutic education training in 2017.
During this programme, I emphasised therapeutic education's exchange and listening goals to help patients and carers create care pathways. To encourage co-decision on project stages. This requires trust and collective voice.
Carers must listen and empathise beyond their knowledge for this to succeed. Patients can only express themselves and participate in the initiative there.
The ability to feel someone else's feelings, to put oneself in another's place, is what many characterise as empathy. Put yourself in their shoes? Can this happen, and what are the risks and limits?
After retiring as a social worker, I have long been troubled with the ethical challenge of "otherness" as articulated by Emmanuel Levinas 1: I cannot reduce the "Other" to "myself". “The Other” is “infinite” since I will never fully understand him.
During a therapeutic education argument, a Parkinson's patient said: "You will never be able to experience what I experience and feel, when every moment is unknown and risks new anguish. This individual was honest.
But her slightly harsh statement hit me greatly, confronting me with her moral agony, which only she can feel. This made me sad, alone with my intense and true emotion, which she couldn't experience. My carer job often involves this.
As a carer for my wife and others with the same condition whom I support, I seem to find the same "non-confusion" and richness in discovering the other.
This emotion brought me back to a deeper meaning of empathy as I "transposed" it at the end of a recent study day after training in "systemic approach 2" from the person's help and/or support.
As a carer, I remembered that empathy is the ability to be “touched” by others' emotions and suffering. Instead of allowing this suffering consume me, I acknowledge its emotion. With the possibility of telling the other that by listening to his suffering, I feel a very unique emotion that the other cannot take away.
My emotion becomes an invitation to share ours. If he accepts, this encounter may lead to the formation of a “alliance” to address mutual suffering and fight together.
A quiet, inconspicuous proposition from this standpoint must be made to the other, possibly without words. He can refuse or not listen. Or to wait until it's ready.
Emmanuel Levinas (1905-1995), humanist philosopher. In Totality and Infinity (1961), he outlines a relationship-based ethics.
The systemic approach analyses how a person interacts with their environment, which includes their psychological context (emotions, thought pattern, beliefs, etc.) and family context (culture, education, family history intergenerational, links between family members).