Dying Well

@mir123

There is a wonderful drawing by Goya, drawn when he was 80 years old. It shows an old man with two walking sticks, holding tightly to them, but taking a step forward. The caption says “Aun aprendo,” - I’m still learning -
Another drawing, possibly done the same day, shows an old man in rags on a swing, swinging vigorously, grinning from ear to ear.
I don’t know what Goya meant by these drawings, but I enjoy them very much.
They remind me how, growing old after a difficult, painful life, Goya learned new graphic techniques and painted until he had a stroke at 82.

I was very moved by what Miriam wrote:”I want to add that I see life and death as so interconnected that I don't feel that my death needs a particular religious or spiritual approach.
…I'm in a great Death Cafe--four friends monthly on zoom--and we have started to really focus on the concept that how we want to die is also how we want to live.”

In my understanding I don’t think of my personal life/self as living on after death.
I think of life as made of many interleaving layers of individual lives, sharing our many abilities, loves and needs to make our shared and individual lives possible.
This view imagines Living as Contact.

We often speak in terms of Life as Measurement….actuarial tables, for example. More years, more money, more power… Perhaps we imagine Life as Measurement a bit too often.

Thinking of Living as Contact leads me to the real people, of many generations, who have touched me every day in ways that shaped the course of my real life. Sometimes big things, sometimes little, sometimes wonderful, sometimes very difficult. Some of them I wanted so much to change, as they wanted to change me, but we could not. Sometimes it was a contact from which I still rebound, but it was very real.

Now all those layers of older generations are gone, and I’m beginning to witness the deaths of fellow members of my layer.
Watching as my layer “peels off” shows me that some day I will also peel off.

But I’m still learning.
I’m learning that the time during which I can share with others is extremely precious.
I’m realizing that I want to learn more about sharing, and perhaps be less driven to always learn more and more. Maybe I can learn to listen better.

My friend Cathy is very ill.
I want to play music for Her, not the music of my biggest ambitions.
I want to give the music I can play that is best for her.
And she will listen for me. She will help me to share.
This has always been my ambition.
It’s just taking me a while to find it.

@edsutton,@grammato3, and all... I began this thought process several years ago after receiving a diagnosis that shook me deeply, pushing me into a different reality. I thought I had dealt with my mortality fairly well during and after caring for 12+ years for my mother who suffered greatly from Altzheimer's. I was the only family member who helped her during those years, so there were many years of deep searching dealing with emotional family and personal relationships as well as mortality itself.

I found after receiving the diagnosis and prognosis of my own new illness, there was more internal work to be done. I withdrew peacefully into my thoughts, sitting in my home quitely, thoughtfully working through the disease information and prognosis, and moving into the practical aspects of ending life.

My son is now 57 years old, only child and I am now single for many years, living alone. My son is 100% disabled for over 25 years and deteriorating fairly quickly now. If I survive him, I am determined to leave him with a minimum of turmoil, decisions and issues to face.

I spent the last several years clearing out my home, completely. I alone cleared my mother's home after her move into assisted living and was devastated by that experience. She was not prepared for living at that point, surely not for dying. I had her entire life's belongings to go through - papers, photos, clothing, shoes... she loved gorgeous shoes... furnishings, antiques, paintings, and of course the normal kitchen and living stuff. I did it all by myself. Alone.

My business suffered for a couple of months during that time, as I was not available and had to hire more help. Decisions are overwhelming... a decision on each piece of paper I picked up, each piece of jewelry and every full drawer. It was devastating for me emotionally, physically, financially, in every aspect of my life.

At that moment, I made a clear decision that would not be my legacy for my son. In 2025, I cleared my home, completely. I hired an estate sale company and sold everything I didn't love in some special way and want to keep until my death. I sold many dear collection, furniture - even family pieces that were hard to let go, but my son will not want nor use any of that and other family had everything they could need. 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.

I gave my dear son the best, kindest, most loving gift a mother can give. Peace.

Then, I had lawyers complete the paperwork you've discussed, after working the particulars with my son. It made him deal clearly with my mortality as well. That isn't easy for our children. But, necessary.

Left to accomplish are the final financial issues of final planning, cemetary and such. I wrote my obituary, my celebration of life or memorial preferences, even the hymns and music I would love at any service. All up to my son or whomever is planning. No service is necessary at my age and situation. Many of my friends are gone now, unable or unwilling to attend such services, and it may simply be an unnecessary expense and a lot of work. I don't truly care at this point. Do what is best for him.

I am now working on my son to get the paperwork completed and decisions made for his last wishes. I may deal with that depending on his health, but someone will need this completed, so I must help him deal with his reality.

I also had my home renovated a bit for more comfort and ease of aging... large walk-in shower, new flooring and painting, easy decorating for my comfort and simplicity. I have a small kitchenette in an upstairs bedroom so I can live comfortably upstairs, safely avoiding the stairs if I need. It is a good situation for my life at this moment.

After experiencing 2 different month long NH rehab visits last year learning to walk again, regaining limited mobility and strength from serious hospitalization, I made a firm decision and made it well known I do not intend to move into a NH if I am able to make my own decisions. I learned a lot and am quite determined to not be in that situation again.

So, there you go, folks. I'm here for however long I am here... until my lord and I come face to face. I am attempting to live these months, years with clarity and have some control and peace over my life. I enjoy being alone now, enjoy my 'new' home and my situation, enjoy my scaled down lifestyle. I have a lovely peace knowing the junky stuff is completed.

May you take the steps you choose to walk as you choose this last journey in life. We have no control over the method or timing we leave this life, but we can and I think we should do our best to leave is as orderly as possible. No, I'm not a control freak, but it does feel wonderful knowing I am leaving my son with as clear a path as I can. I faced reality and moved ahead. Lovely!
Blessings, Elizabeth

Ed and All:
I had a GP who told he would keep working until I died, then he retired anyway! We are still good friends. My wife died 11 years ago after she was diagnosed with ALS. She did beat the average of two years from diagnoses for 2 years, eight months. Our second daughter became her caregiver and now she is mine.

My situation may be unique but I don't believe so. When I moved to MN in 1974, I bought 40 acres of woods and had a house built on it. Well before my wife became ill, we had a chat with a lawyer and defined an estate for the property and house to become assets of the estate. The tax benefits are significant at the time of mt death. I have stopped driving so all of my assets are now in the name of the estate.

I have been Type 2 diabetic since 1991 and in the last two years I have gotten better. My insulin requirements are now at an all time low. I take Ozempic and have lost 30 kilograms (66 pounds) and would like to loose ten or more pounds--22 pounds would put me at the weight I was at after my military training period.

One philosophic point to the Q of less than six months to live. Make sure your wishes are documented and well known. Stop worrying and starting living! If some of your children ask the tough question of why did you ...? My answer is to help all of you make meaningful, positive, true decisions. But I don't care what you do or how it turns out because I will be gone!

I have visited a few places of renowned adventure in fun, not normal tourist trips. I haven't been around the world but I have been to Iceland several times. The last time almost got me, I got a infection at the Blue Lagoon (The cooling pond--hot tub--for the power station.) Then we spent two weeks in the Highlands of Scotland with over half of my family. My wife and I spent two weeks in New Zealand touring the North Island. We could have spent two months and not seen it all. I been to most of the 50 states, again, not all of them. All of the lower--border--provinces of Canada. Depending on your ability to move around, do thing and go places you can enjoy!

If you are a Star Wars fan, be a Jedi, not a Sith! Focus on the good (people, things, and life in general) in life.
Two ways to live: "Win-Win" and "Win-Lose". Chose the Win-Win and live!

You may call me crazy - but I’ll throw out this idea nevertheless.
I’ve been to funerals and celebrations of life (after the death) and wonder, “who picked out this music to play?” It doesn’t sound like the songs of the person I knew. Just a jumble of elevator music or common religious music.

So, I’ve started a meaningful playlist that if I were at my funeral 🙂 these are the songs I’d choose. My sons will know where to find the playlist - and I’m fine if they don’t want to use it, but my guess is that these songs will “speak” to them as well. I named the playlist “At Last”.

Includes songs like Tapestry by Carole King, Sunshine on my Shoulders by John Denver, Somewhere over the rainbow by Kamakawiwo’ole, and Home by Blake Shelton.
We’ll see how many decades this music will span in the end.

You may call me crazy - but I’ll throw out this idea nevertheless.
I’ve been to funerals and celebrations of life (after the death) and wonder, “who picked out this music to play?” It doesn’t sound like the songs of the person I knew. Just a jumble of elevator music or common religious music.

So, I’ve started a meaningful playlist that if I were at my funeral 🙂 these are the songs I’d choose. My sons will know where to find the playlist - and I’m fine if they don’t want to use it, but my guess is that these songs will “speak” to them as well. I named the playlist “At Last”.

Includes songs like Tapestry by Carole King, Sunshine on my Shoulders by John Denver, Somewhere over the rainbow by Kamakawiwo’ole, and Home by Blake Shelton.
We’ll see how many decades this music will span in the end.

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