Dear reader, I know this isn't a happy subject

Jory Squibb: Planning for the end and my 100 things

Sun, 09/07/2014 - 9:00pm

I recently attended an all-day workshop sponsored by local health care providers, which focused on doing the detailed planning for one's "end of life."  There were approximately 40 of us attending, that sunny Monday morning at the Salvation Army in Rockland. It felt like a Monday morning, too, as we began real nuts-and-bolts planning.

We learned, for example, how important it is to appoint a health care agent, who is empowered to make decisions when one is no longer clear-headed.  It's important to have an up-to-date will with lots of exact details.  And it's important to fill out an advance directive form, specifying how you want to be cared for.  None of these things had even crossed my mind at age 73!

The workshop began with watching a documentary called Consider the Conversation, which is so provocative I think every adult should see it.  At one point a doctor, suffering from ALS, a progressively debilitating disease, talked about writing out his "100 things," that is, those things which make life worthwhile, and watching them, one by one, become impossible.  

This allowed him to measure more accurately the point when his life was no longer worth the increasing effort and determination necessary to sustain it. 

When I got home, I felt envious of his forthright clarity, since I've always been sure that I didn't want to outlive the enjoyment of life. So I took out blank paper and began filling in those activities which give me joy.  I put them in three categories.  

In "presently doing" I put the things I love and still can do: Swimming, hiking, kissing my wife, morning tea, being outside, etc. There were 57 of them!   

In the category, "in transition" I put the things I'm slowly letting go of, like world airline travel, fixing my own car, sailing oceans, etc. I still do these sometimes, but there's not the old zing. 

Finally, in the category "no longer doing," I put things like downhill skiing, running, intense yoga postures, etc., which are no longer wise or perhaps no longer enjoyable.

Now I could look at a map of my own personal aging.

As years pass, items will move from the upper category to the middle and then lower category. At some point in time, it might become clear that it's time to trade in this battered vehicle. In my upper category of enjoyable things, I also scanned for activities so very vital that I couldn't imagine living without them.  Could I live without walking, without being outdoors, or without recognizing friends and family? 

I decided that these last two were absolutely essential, and that I would instruct my health care agent (a.k.a. my lovely wife) to discontinue food and drink when either of these two became impossible. 

I recently read a book, Knocking on Heaven's Door, which left me with two clear take-home lessons. 

One is to delay disability but not death. This means, yes! Put up those strong handles in the shower. Compensate for our gradual disability. But let death come naturally when it beckons us. 

The second lesson is: dementia is worse than death.   We often delay death in order to live demented lives, which is a worse situation.

 You might notice that I'm assuming that to some degree we can choose death. I notice that often people do choose to die, often by simply giving up the will to live.  As this will fades, they sometimes give up eating and drinking. This natural, old-fashioned way of dying results in only a brief hunger and thirst, and then results in a peaceful few weeks until kidney failure.   

My fear has always been that I won't have the clarity to make such a decision; but now, with a health care agent, who hopefully will not sabotage my wishes, I can live this next period with more peace of mind. 

 I think it's helpful not to call this process suicide or assisted suicide, if the patient's agent enforced the patient's earlier decision. These words carry along such baggage.  Also, is this decision the ego's last control-trip?  Yet, we often live additional years, or even decades, because of recent high-tech interventions.  

We've managed faulty hearts, driven cancers into remission. Living in this recently-available encore with good quality of life is wonderful. But at that mysterious tipping point,  when perhaps we're wearing out the quality of life of a caregiver, or using more than our fair share of health or natural resources; it's an act of compassion to return to a more natural lifespan.

 So, dear reader, I know this isn't a happy subject. But try doing this thinking and planning. Make your will, share your passwords, appoint your agent, make your directives. Like me, you may actually find yourself, not cast down by it all, but rather more energetic. Something  which was nagging, denied, postponed, half-done has been faced, thought through, and taken care of.  You're more aware now that your joys and your days are numbered.    

You may find that the morning toast and tea, or the hug from an 8-year-old, is better than ever!   


Jory Squibb lives in Camden.