In Communion

While immersed in this work I meet many people living with dementia. I read articles written by doctors, care professionals, advocates, family members, and individuals with many different forms of dementia. I am inspired and then discouraged. I am validated in my view and understanding, and then I am challenged. Through all of this, I have come to find that each person not only has their own journey with dementia, that I already understood to be true, but each person has a different language, view of what perfect care looks like, and wish for the “industry.” I have worked with individuals who wish for me to say they are living with dementia, while others, suffering from dementia. I have met individuals who long for Dementia Villages, while other want to dismantle all we know about our care communities and memory care. I have spoken with those who wish to be called elderly, while others, elders. I have met people who think living at home is best, while others want to go into a memory care wing weeks after diagnosis.
What becomes the link that connects not only these individuals living with dementia but all of humanity, is the desire for connection, to be in communion with one another, to be in relationship. This is the simplest of tasks yet has become forgotten about, or if remembered, turned into a complex task to ignore as we march forward with our own agenda and desires. May we reset to zero for a moment? Forget which model or care method we are fighting for or against, and become relational with those we seek to serve. We might find that our work and vision for aging and dementia is the one we are set to charge after, but all of that would be in vain if we do not walk with those living with dementia.
I have wondered for a long time now, why do we, once someone becomes a resident of a care community immediately medicalize them, and in doing so start to dehumanize them. This is not being relational with each individual. Why does everything become “therapy” and no longer experiences in the fine arts or in life’s tasks once a diagnosis exists? There is a place for therapy and therapeutic processes but there is also a place for life as we know it outside of the clinical and medical box. Can we remove the medical and care model jargon and just be as fellow human beings in community with each other. We should know one’s life story as much if not more than one’s chart. We should understand that one might have dementia and then forget it and simply build connections with those we encounter. These questions have been illuminated by the discovery that others have asked the same questions. Advocates living with dementia make similar remarks about the way we walk with them. How can we live in communion with all individuals regardless of the information in a chart, regardless of age, regardless of ability, regardless of their ability to fit in the box that we built and labeled, “normal?”

Published by Kathryne Fassbender

I am a Dementia and Creative Engagement Specialist. I am also the granddaughter of someone who lived with Vascular Dementia.

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