Unless something else happens I will die of Alzheimer's Disease/Dementia.  Not that my condition will kill me, but I'll end my life before I reach the "black line" of this horrible condition taking over my life.

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After the shock of the diagnosis sank in I've been planning for where this condition will take me.  The plan is for cremation, and I know what grove of olive trees I want my ashes scattered in.  Then it occurred to me that if my end is to be scattered ashes, I won't need a tombstone in the traditional sense.  But the feeling continued - what do I want to say as my final message?

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This question led me far further than I had imagined.  Not only what to say, but how to say it without an actual tombstone?  I looked at the most recent part of my life, and the clarity that this tough situation has brought me, for answers.

 

Dementia is grim.  It's been grim since that day in October 2022 when the neurologist at the hospital in Israel told me I have Early-Stage Dementia.  Since then there has been an ongoing string of grim events and signs of my ongoing decline.  I've come to accept this.  But an incredible thing happened.  While I was in the waiting room at the hospital for the MRI scan that would reveal that I have this terrible condition, an event occurred that is so precious to me that later, when I was preparing my tombstone and deciding what I want on it, that I decided to put this event on it.  Life brought me my tombstone at the same time I found out I would need it.  The ever-present grimness of dementia has come with a present for me that I would not have imagined.  In a sense it comes down to this: create your own tombstone and live your own life.

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What happened in the waiting room is described in the 1-minute 43-second audio recording above and is marked “This is my Audio Tombstone”.  It is spoken by a woman in Hebrew with an English translation next to it.  In brief, when I walked into the waiting room after changing into a blue gown there were two women there, also in blue gowns.  I said a few sentences which led to an intense and very positive connection between us, such that none of us paid any attention to our surroundings or our conditions.  There is an audio report of the event because one of the women was so struck by what happened there that she wrote about it to an Israeli broadcaster, who included it on her radio show (the recording is of that part of her show).  The 1:43 recording is my tombstone even though my name is not mentioned in it.  Why is it so close to me?  I chose it as my tombstone because it completely represents what I would have liked to bring into the world, that when I'm in a situation I bring my energies into it to help the moment be more positive and richer for the people it touches.  I feel this 1:43 expresses what I want to have brought into the world, and what I want the result to have been.  It is also my beacon, my lighthouse, for how to live my life now.  For this purpose I do not call it my "Tombstone" but rather my "Lifestone".

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Another part of creating my tombstone is to consider the grief and loss that my family will go through as a result of my actions.  In what ways should they be aware of my preparations, what feelings and messages do I want to express to them during this process and how should I express them, what will happen and how are they likely to respond after my death -- like creating my tombstone, I've found that this grief planning has a large impact on me in addition to how it will affect the children.

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Having a tombstone has brought me a very special feeling of calm, of acceptance, of relax, of complete.  And what this tombstone is also doing: it is a beacon for me for living the time I have left.

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Creating My Tombstone is part of The Alzheimer's Conversation