Be Here Then

why and how to write & create an ethical will, hospice card, or other legacy

sidetracking

In stepping aside from the usual concerns of my own daily life and stepping instead into the concerns of elderly family, one with Alzheimer’s, I am learning some things I thought I already knew.

Always a writer but not a diarist, I am finding that  keeping running notes on the mundane activities of the day — even if only the sequence of events in abbreviated form — is very helpful, especially when faced with the questionings and insistences of the memory-impaired.

Having a dog that needs walking provides needed exercise and perspective.  Visiting is one thing; living within that world is another.  My dog is, again, a lifesaver.

A friend counseled me to be a “passenger on their train.”  I thought I understood her, but I had not thought about what that meant when the train was off the tracks, and my constant impulse in this word of vagueness is to return to the predictability of the rails.  That friend started a wonderful hospice, and has given profoundly helpful advice before, so I am…learning yet another thing that I thought I already knew: trust.  As learning involves a great deal of failure, I think I must be “on track” — yeah, I know, couldn’t quite help myself here.

A survivor of the ravages of long-term undiagnosed sleep apnea, I have an idea of the terror of the moment you realize your brain is not working.   “Terror” barely describes that moment.  As a friend pointed out about an Alzheimer’s (or other dementia) patient:  “you knew it would get better; they know it won’t.”

I thought I had learned about compassion.  This friend pointed out to me how much I still have to learn.

I have a confession to make:  I teach others about writing ethical wills, but I have not yet actually written my own.  My excuse?  I have no children.  My hospice-founding friend scolded me for this, and reminded me of all the friends she thinks would want something from me.  It just dawned on me she probably was meaning herself, too.  What she said surprised me, and I don’t think it should have.  More learning.

Each of my friends reads and hears from me what I value, cherish, appreciate, and think is great about them: I make a point of telling them whilst we are alive.  Don’t they have my emails and the occasional card or letter?  Sure.  Truth be told, I kind of think that body of work does, in fact, constitute my “legacy” to my friends, so why is this friend insisting even I write an ethical will?

Today, I think because an ethical will or legacy letter/creation needs to be one thing: a document, a letter, a video-with-transcript, a DVD-with-handwritten-note, a sketchbook.  It needs to be a focused thing which can be pulled out in a needful moment and reviewed.  Why?

Because no one wants to search their email account on a bad day, in a difficult time, to pull up the hundreds of emails we’ve shared, trying to find the ones that say what they need to hear.  We want to go to the one place we keep such valuables, pull open the one special place or file or drawer, and reach for the love pulsing, glowing, waiting for us to hold it again.

I have saved a few text messages, starred a few emails, glue-sticked a few notes into my notebook, the sustaining words of love and patience I need in this time.  We need these tangible things.  And in a world of shifting realities and imaginings and denials, I’m all about the tangible.

Love written is a tangible thing, and sometimes we really need the tangible.  Write your legacy letter.  I’m drafting mine.

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2 thoughts on “sidetracking

  1. beautifully written and felt. Be there now and you will be able to be there then.

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