The Living~Dying Duet: Setting Out on the Journey

The Train Left the Station and I Was On It. I Had No Idea of the Early-Stage Dementia Journey.

My life has become a Living~Dying Duet. The initial shock of receiving the diagnosis of Early-Stage Dementia was overwhelming. Learning about the living~dying duet that became the landscape of my life was an immediate need, so that I could feel that the "living" part still existed. From there on it was a journey of exploration, since the maps and landmarks and signs that I had gone by earlier no longer existed. My mind's thinking ability was reduced which allowed my guts' feeling ability to increase, and my guts became my guide.

One thing that became clear from the beginning was my need to talk about this journey. Within one week of the diagnosis I started making short clips on my mobile phone in which I spoke about what was happening and what I felt about it. This happened "automatically" in the sense that this quickly became one of the ways that I used frequently and openly to try to deal with my condition. I saw how important this was to me by my actions. I was living near Jerusalem at the time and found that there was no support group in Israel for people with Early-Stage Dementia, so I started one so we could talk about it together. As has happened so often on this journey, one unexpected and unplanned step led to the next unexpected and unplanned step. The more I spoke about Early-Stage Dementia the more it became clear that people wanted and needed to hear about it, and I was interviewed twice about it on Israeli television. An Israeli radio broadcast about it was to become part of my tombstone which I created during this process, which I'll describe later.

The journey was underway. I had neither planning tools or the mental capability to think about where it was going. The journey was and continues to be a flow of feelings and realities much different than any I had ever experienced.