Saturday, August 4, 2018

Sky: Let's Talk about Death

Part of living with a terminal condition is, well, living with a terminal condition. Those of us on the dementia continuum have an excuse to look ahead and imagine our final days and hours. We’re on a special detour that leads only to death, right?

And, as an excuse, it’s not even a very good excuse. For many of us, myself included, our deaths feel closer now than before we made the acquaintance of Dr. Alzheimer. But it’s a phony excuse because, last I heard, demented people aren’t the only humans who will die at the end of our lives.
I would guess that most Americans could benefit from more contemplation of their mortality, rather than less. In this regard, many of us demented ones just might be a rare bit ahead of the game, if we’ve been paying attention.

I’ve just finished a fascinating new book, available at the Library, about end-of-life options and choices, including for people living with dementia….At Peace, Choosing a Good Death After a Long Life, by Samuel Harrington, MD. Dr. Harrington’s not-so-radical observation after a 30+year career as a clinician (as well as caring for his own parents) is that while most people express a desire to die peacefully at home with their loved ones, way too many become side-tracked by a medical system that repeatedly offers aggressive, often painful, treatment options or tests “to buy a little time” or to give a new drug a try to forestall the inevitable.

Harrington reviews the five chronic diseases that cause over 90% of deaths in older people. He notes that “Cause of Death” is rarely as simple as a doctor choosing one of the Big Five. More realistically, there is a cascade of problems, each with its treatments, that weaken the body further, leaving the person vulnerable to a further weakening, even if the treatment is “successful” as its short-term goal.

Here is Harrington’s List:
  1. Congestive Heart Failure
  2. Cancer
  3. Chronic Obstructive Pulmonary Disease (COPD)
  4. Dementia
  5. Diabetes Mellitus (DM) 
Harrington urges older people and their care partners to take a close look at treatment options as they develop a comprehensive plan for a loved one whose condition is serious. Do I always want to be resuscitated if my heart should stop beating? Do I want a feeding tube if I can’t eat? Do I want a breathing tube if I am unable to breathe on my own? How much is enough?

Ever practical, Harrington suggests that if someone is plagued by two or more of the conditions on his list, they should think very carefully about adding (and treating) more.

And, how about this list? Notice any old friends?

Ole buddy Alzheimer’s, of course, standing his ground with the other bullies.

A friend asked me the other day, if I’d written anything lately. She hadn’t seen a blog post for a while.

I assured her that she hadn’t missed anything. I’d been busy with other things, what with summer and all. But, I was working on a piece about death, that I was having a good time with.


“Yeah! Death! What d’ya think?”

“I think…. I think I better check that my spice rack is still alphabetical.”

Oh, OK. I get it. Who really wants to talk about death? Right? What a downer!

Loss, Sadness, More Loss.

Regret. Pain. Fear.



Thinking about death is a gift — a gift to yourself and your family. To have the advance notice to make decisions, to talk about choices, to consider what makes for a good life — and a good death.

I’ve had the opportunity to let my family know my wishes about my care, now, before the stress of serious illness or injury intervenes. I have written down these wishes, with the help of a local attorney, in a legal document called an Advance Care Directive, which is binding in all 50 states. In Vermont, my Directive is instantaneously available to the staff in every hospital in the state.

I’m pleased.

Pleased to be on the same page as my family and care partners as the dreaded disease unfolds. Pleased that I don’t have to worry about a medicalized death. Pleased to be able to live now, and not be concerned about what will happen at the end of my life.


  1. Sky, I totally get this and agree. Thinking about death and our various options is such a gift. I won't hijack your blog with my own personal reasons for thinking this, but I just want you to know that more and more people are seeing end of life issues this way. Your courage in writing about it is also a gift. Many blessings on you...

  2. This is such an important post. I remember Ron Cook (preaching and ritual teacher at Starr King) on our first day of weddings and funerals class. He started the class by urging us all to make arrangements for our own deaths (ie will and living will). It really stuck with me.

    You are such a rock star! This blog is really a gift.

  3. This is such an important topic for everyone to talk about with their loved ones. Another excellent book, for those much closer to the end of life, is Living With Dying: A Complete Guide for Caregivers by Jahnna Beecham and Katie Ortlip.

  4. Also, I read a cute story in the Atlantic about "WeCroak" an app that sends you text message reminders 5 times each day that you are going to die. Here's the link:
    It's based on a Bhutanese belief that the secret to health is an ongoing awareness of our mortality.

  5. The Dalai Lama says something along the lines of, "I'm a Buddhist. I think about death every day." You remind me of him. Thanks for this post, Sky.