Dying Well

There was a very timely article in the NY Times today on this topic, how people - especially as they age - tend to avoid talking about the inevitable issues of aging, illness and death. I'll see if I can share it here: https://www.nytimes.com/2026/05/03/opinion/old-age-planning-parents-family.html

@ess77
Elizabeth, I love you!
You wrote: "So, I mourned and went through quite a time letting go of my life other than necessities and the most dear items I own. It continues to be hard at times, remembering and missing some things, but I am relieved, unburdened by things now and have a lightness about my shoulders. It's done. It feels excellent."
Our lives are mixes of success/failure, happiness/disappointment, completions/incompletions, etc. Letting go of lost hopes, things not needed any longer, and so on can require grieving about things that didn't go as we wished, good things gone that won't return, and so on. Letting go of things we needed when we were young, but don't need now, means admitting that we're not young anymore.
But the pay off is space, lightness, clarity and freedom to live our best aging life now. I don't want to spend my last years curating the museum of my past.

@larryg333
Larry- I had this discussion with my GP this morning during my annual checkup. We go over this every year and she requests any updates for her file. I'm in the process of re-writing my thoughts about my end-of-life intentions and will send her a copy. (All of the usual legal documents have been done.)
I feel very lucky.

@edsutton, larryg333, and all... Love you back. This is a much needed open and honest discussion many folks can't or don't handle well. I needs to be faced with honesty, love of oneself and others, preparing as most of us have done throughout our lives. Once I had my time to think deeply after reality hit me that indeed I am mortal and maybe more mortal than I was willing to believe... I prayed, meditated, enjoyed my birds and trees and nature, rested, thought, and came to understand the situation as it was in truth.,, Then, I began to see clearly what needed to be tackled and moved ahead. That in itself was tremendously freeing. It has taken me a couple of years, thankfully I had them to use, but through those times I've been quite ill, seeing my body struggling to move and to breathe and to find joy.

There is little joy in my life, I must admit, but a lot of peace. I had joy yesterday. Today, I'm thrilled with peace. Moments of pleasure with nature or some interaction with my son or my precious kitty... or music... but not real joy as I knew it. Peace. Pleasure. Quiet. Rest. Love.

I do miss joy, though.

Ed, the one thing I can not prepare for is a long-term illness completely debilitated, as I was last year for several months. I do not have the unlimited funds needed for an extended illness needing hands-on care. That is concerning. But, I don't see an answer for me other than to leave that issue in other hands. In my case, I leave it to my dear lord, my God, to help there and protect my son from the burdens of caring for me in some way.

I have faith and trust He is in control. He is well aware of our situation, so God is in control. Yes, I will discuss softly and as I did of my faith in my God. It is an over-riding part of my life and the end of life. I will not overstep, but I will speak of my faith. It guides me in every day.

Larry, one thing for which I am eternally grateful is my team of caregivers at Mayo Jacksonville. The team who helps me make it through each day is marvelous, caring, understanding and hear my wishes.

I now, finally, after 20 years trying struggling to find him help, have my son established with a team overseeing his care. Wow! That was a goal I had to accomplish before I could let myself move forward at all.

He now has 5 doctors who care for him at Mayo and a couple outside Mayo. He is getting help now for the first time in this nightmare. Finally. My heart is overflowing with thankfulness for this. Overflowing. My biggest challenge. Hardest to accomplish. Most important. Now, I can have true peace.

As you see, there are still some areas needing completion. I'll get them done. If not, oh, well. I find that is a pleasure in aging... I can say, 'Well, there you go." or " Oh, well." or " That's the way it is..." or simply, 'Yes!"

Blessings, Elizabeth

O.K., our thoughts together are progressing...

One aspect of dying well is getting things arranged for after our death.
This can include plans for funeral, burial, etc.
(For this I made arrangements with the Neptune Society. Wherever in the world I die, Neptune will arrange for transport of my body, completion of legal papers, cremation, delivery of my ashes to a designated location and funeral/memorial according to my wishes, all contracted and paid for.)
Some younger friends have agree to scatter my ashes, mixed with my dog's ashes, along a favorite trail.
I am very glad that this is taken care of.

This can also include wills and arranged distribution of valued possessions, and hopefully easy removal of any other household possessions. There are books and kits to help with this.

Another aspect of death planning involves legal documents concerning health care: POAs, DNRs, Advanced Care Directives, etc. For the most part these can be done with the assistance of an attorney or other professional, and the forms are mostly printed and completed by selecting given choices, once you have done the necessary discernments.
Choosing persons for your healthcare POE can be tricky, depending on individual circumstances. Communicating with them about difficult decisions they may need to make is another topic!

Long term care insurance is another, very important thing to consider. I hate paying and hope never to use it, BUT it's there if it's needed.

All of this needs to be done, and it feels very good to know it has been done. But it doesn't cover the deeper question I want to ask, and I'll give that in a separate message.

Three events led me to bring up the questions I’m asking about dying well.

-A few months ago my friend Karen wrote that she was planning soon to end her life by VSED, Voluntary Stopping Eating and Drinking. She was 83 years old and felt that her health was declining to a degree that she could not do the things that made her life meaningful. About ten years ago she was diagnosed with early cognitive difficulties. She made dramatic changes to her life and seemed to be doing generally well, but we were not in direct contact, so I don’t know her exact difficulties. We had spoken some 25 years ago about her intention to end her life when she felt it “was time.” She died at home with caretakers in just four days.

-About a week ago my neighbor and good friend Cathy was diagnosed with metastatic cancer in the linings of her lungs, full diagnosis pending lung biopsies this week.

-Two days ago I read the New York Times article Susan linked.
I was particularly “caught” by the realization that I didn’t know how we could continue living in our current home if my wife or I could not climb the stairs due to injury or stroke.
I found the image of myself living after a serious stroke very disturbing.
Although I can imagine altering one of our downstairs rooms to fit a hospital bed, I had to imagine how much my studio/office would have to be changed.
Would I give up my musical instruments to make space? Would I have use for them if I were half paralyzed?
What would my life be if I could no longer pursue the musical, woodworking, community service and forest care projects that give me much pleasure?

I think of a scale of dying.

Dying could take minutes, hours, days, months or years.
It can be a process of gradually grow weak, or it could involve significant pain, disability and cognitive loss.

About a year ago my neighbor Gracelyn died during a surgical procedure on her spine. She went into the hospital and two days later she was taken off life support, never becoming conscious.
That, I’d say, was a quick and easy death.

Some years ago I spent a lot of time with a friend during his last months as cancer spread throughout his body, eventually his brain. He had several good friends and excellent insurance and savings, so he died in his home with round-the-clock care.
Another friend and I were in bed with him holding him as he died.
His last months were filled with love as he said good-bye to his friends and made a small trip to see the ocean.
There was a lot of beauty in his last months.

Decades ago I cared for the wife of a friend and teacher. She’d had a massive stroke and was disabled both physically and cognitively. It was a very difficult situation that went on for five years or more.

Though I’ve taken all possible steps to have a “good death,” I realize there is much that can’t be predicted, or insured against.

Because of Karen’s VSED, I read about someone who ended her life this way, knowing that she had Alzheimer’s disease, and that she needed to do this process while her mind was still intact enough to plan and follow the protocols.

So, to simplify my concern, I’d say that the possible uncontrollable aspects of dying have become more “in my face,” and I’d like to hear about other folk’s experiences of this.

How do we imagine, think about and perhaps make some defensive plans in case of a hard and extended experience of dying? How have you grown while considering these unknowns?

Thanks,
Ed

@edsutton My dad had a series of strokes in his late 80s. He stopped eating and drinking and died within a week. I'll never know if this was a well thought out plan or perhaps just an intuitive response to being so ill--much as my beloved pets have all done.
I myself had a classic near death experience in an ICU when I was 21 (now 72). I had swine flu, sepsis, and extensive surgery. So I want to say that the experience of almost dying is not like thinking about it rationally. I was not in this world. I had no concerns about people I loved, things I possessed, or plans. My body knew how to die. Of course I didn't, and although I'm grateful it was very difficult to be yanked back into this world. I don't have any metaphysical or religious beliefs based on this experience, but although it was painful I permanently lost some of my fear of death. It is natural. It will work out, particularly if we limit medical intervention at the end. That said--I have a burial plot, pre-paid funeral, will, DNR, etc. Most important, my husband and I just had a meeting with daughter and son-in-law to discuss pretty much everything pertaining to end of life. These plans are useful. But the experience of dying is going to be its own thing, and I believe in most cases the body's natural responses will make it tolerable. Thanks for the great discussion--one of many thoughtful topics you've posted.

This discussion reminds me of a book called The Collected Regrets of Clover, in which the main character who is herself an end-of-life doula - or death doula, states that many people facing death express these three things;

1) Regrets: the missed opportunities, mistakes, and sad memories of the dying, such as failing to travel or failing to say goodbye
2) Advice: wisdom for the living, often highlighting the need to take chances and live fully, based on the findings of the study
3) Confessions: Contains intimate secrets, confessions, and hidden truths revealed only at the very end

These are not only things I've given thought to, and in some cases written down, but in my own conversations with clients gently ask in a veiled way to prompt discussion to help relieve some concerns or impart some wisdom. Such as: is there anyone you wish you could talk to again, what would you like to say? Is there anything you'd have wished to have done differently? Tell me what you've learned in your life that could be helpful to somone else? And for leaving a legacy - if someone could hold onto you forever, aside from a picture, what would that look like or feel like?

This is all very different from the practical items like wills and medical proxies, but when you think about it, just as important.

Thank you, one and all…for spiritual as well as practical guidance….cancer taught me a lot, and I’m working on doing all I can to lighten up in every way, and to lighten others’ burdens as well…and let us all remember to LIVE as well as we can until we die…and not ‘die’ so much before we actually do pass on..my heart is with all here.

Continuing my focus on the dying part of dying, particularly the possibility of dying through a long, extended debilitation with loss of ability to direct my own care.
This could be the case in Alzheimer’s and other dementias, serious strokes and cerebral vascular disorders and late stages of Parkinson’s and other similar illnesses.
What are the possibilities, the ways to die well?

It is possible to create directives that refuse all medical treatment beyond palliative care.
My dear friend Charles died quietly of pneumonia at age 95, as per his instructions refusing antibiotics.
His health had declined slowly, but he had been alert, active and cheerful even though blind and wheelchair bound. He liked to go to museums and galleries and have other people tell him about the paintings!
It had come to a point where the rest of his life would have been in bed, intubated, and it was clear this was the point at which he was ready to die. His family and doctor followed his instructions.

In some places physician assisted death is legal. I have no personal connection with people who have passed this way, but various essays about it may be found easily.

Historically and currently, some people have taken their lives by whatever means they could in the face of extended illness. Deaths like this do not usually allow for gentle, loving farewells to family and friends.

VSED, especially as practiced by my friend Karen, can allow for a loving, meaningful end of life.
_Herself to the End_ by Fran Volkmann tells the story of her friend’s decision to die by VSED. I found this to be a very helpful introduction to the topic.

VSED requires the cognitive capacity to understand, plan and carry through the practice of not eating or drinking. Ideally it requires a focused, loving caring support group of friends and family. It is not an option for someone with advanced dementia.

Finally, there is the Minimal Comfort Feeding Protocol. The basic intention is to only feed a patient with advanced dementia if that person wants to eat, not to insist on regular meals, and not to assertively spoon feed or tube feed a person. This practice as a defined protocol is undergoing development.

[Some people in the right-to-life movements are opposed to this practice, they feel that people with advanced dementias should be kept alive as long as possible.
I believe Karen was influenced in her choice of VSED by witnessing a neighbor who spent hours a day feeding his wife. She did not know she was being fed and the food would just fall from her mouth, but he would keep trying until she eventually swallowed.]

I am grateful for the opportunity to think through this publicly, to hear your responses and advance my understanding.
I’ll be updating my End of Life documents to be as clear as possible in case of the need for difficult decisions on my behalf.

Please continue to share your thoughts!

With Love,
Ed