ELDER MUSIC: Felice and Boudleaux Bryant
A TGB READER STORY: Poutine to Padre, Day 7

“Man Plans and God Laughs”

As I mentioned in a post last week, I've been through a lot of pain over the past few weeks. It's much better now but was the worst I had felt during this cancer odyssey since recovery from the Whipple surgery in the summer and fall of 2017.

When I hurt or am sick, my mind wanders to the dark sides of life - in this case, frequent thoughts about when, with a terminal illness, it is time to go. Is it now?

My palliative care physician tells me his patients invariably know when that time arrives - time to stop treatments and for some, to invoke Oregon's Death with Dignity law.

But even with that, my mind was also its usual busy self: things to know, books to read, people to talk with, blog posts to write. Etc.

Stepping back from myself, I could see – if I make it my choice - it was not yet time to die.

When you are healthy and particularly if you are also young, you think you know what you're talking about when in reality, you will come to see one day that you were fooling yourself.

Well, maybe not you, but certainly me. All those big life questions I thought I had so diligently explored over years and, as much as possible, answered? Piffle.

Even with plenty of evidence to the contrary (all but one in my family died of cancer), somehow I believed that I would be healthy and hale until, at an advanced age, I would die quietly in my sleep.

As it turns out, according to a quick trip around the internet, the number of people who do so is hard to calculate and often – especially with elders - the result of underlying disease which may or may not make death while sleeping a “quiet” experience.

Further, until I sat down to make some notes for this post, I had not realized that for many years – decades, to be truthful - I also believed in a contradiction: I had come to see death as life's last great adventure and I wanted to experience it while awake, not in great pain and lucid.

I still do. So what is it? Die in my sleep or die wide awake? You can't have both.

When I moved to Oregon nearly a decade ago, I was pleased to know that along with seven other states and the District of Columbia, physician-assisted dying is allowed by law.

Among other requirements are that the patient be mentally competent, be diagnosed with a disease that will lead to death within six months as confirmed by two physicians, and be capable of administering or ingesting the life-ending drug without assistance.

The drug, I am told by a physician, puts the patient into a coma within a few minutes and death results shortly thereafter.

How is it I didn't realize before that I cannot be awake and lucid enough to experience the main event and also be in a coma? Not that I know what goes on in anyone's mind while in a coma but I doubt I would be aware in the way I want to be during the last moments of my life.

What a dilemma – because I don't want to die in an anonymous bed somewhere in a “facility”, but at home amongst my stuff and one or two or three loved ones. If you let a disease run its course, there is no way to guarantee that.

Which is where I'm stuck.

And here is another thing I hadn't considered: The drugs, acquired via doctor's prescription, cost between $3,000 and $4,000 – and I doubt Medicare Part D pays for them. That pretty well guarantees physician-assisted death is a privilege reserved for the middle and upper classes.

Do the inequities in American life actually follow some people to the grave?

An old Yiddish saying tells us, “Man plans and god laughs.” No kidding.



Comments

What a decision. We all want to be at home, our cocoon of familiar, and seeing the environment my mother was in for the last 4 years of her life led me to vow I would take care of things (if able) before I ever got to that point. On the other hand, like you, I value being awake for things, being conscious...not to tough it out, but to be a part of the last great process. This is an enigma! I know your wisdom for what is best for you will prevail, and my heart is deeply moved by the proximity of this question for you. Thank you for including us.

Realizing even when I did it in a post the other day, I misspelled your name, adding an "e" to the end of the first, I'm so sorry. It's like my being called "Jo-Ann" and someone inserting an "a" in the end of my last name where the "o" goes.

This is so relevant as I look at friends in similar situations. In messaging w/ a friend last night, this was the subject. Alas, she lives in a state where there are no options.

I wonder if for some of us it's like childbirth - I always thought being pregnant and giving birth would be interesting and I didn't want the result! Perhaps there's a virtual reality gizmo like the movie "Defending Your Life" that lets you learn it and still be legal.

About the cost: shaking my head. Even 'death panels' are expensive, aren't they?

And about pain: the Invisible Disabilities Assn. has a great booklet ("But you look good") that addresses the issues of illness that has not obvious outward signs. Pain is one. Chronic pain is a severe form of it. Unless one winces often, it isn't seen.

Oh and "crab walk": thought about it. Does it differ much from a Groucho walk?

Your willingness to continue to update us, Ronni, is a blessing. Yes, god does laugh.

With gratitude.

George Harrison:

A pebble in the ocean
Must cause some kind of stir
And witnessed by the silence
Will reach from here to there
The action that I’ve started
Sometime I’ll have to face
My influence in motion
Rebounding back through space

income Inequality even in death.

Oh Ronni - that is so awful and I am so lucky. I think I would have to be in terrible shape before I could muster up the courage to take pills that would kill me. In Ontario 2 medical people will come to my bedroom, hook me up interveinously and let me go.
There are still problems - the doctor is not allowed to tell you this option is available to you, you must be competent enough to state your wishes. My friend was wanting to die for almost a week before I told her to "talk to your doc" ... she died, peacefully, the day she talked to him. BTW she told me months before that she thought she would know when the time had come. She knew and I trust I, and you, and anyone in our position will also know.
I'm sorry.

I, like many of us that read your blog, have done so since the beginning. I rarely comment because I don't feel that I can add to the conversation that so many of your other readers and friends have so elegantly put forth. This topic is one that as a home care provider and witness to many at the end of their life, I feel that I might have a different perception to offer.

Death isn't an easy process. without aid (drugs) the body struggles to stay alive until it can do so no longer. That being said, I don't believe that a person is conscious during this process nor do I feel that they experience any of the physical sensations. The body is there, but the soul, the essence of what makes us who we are has already gone to another dimension.

In witnessing both types of death, those with and without drugs, I think, unless I die in an accident, I would like to go "gently into that good night". To slip away so to speak, without any fuss or trauma to those I leave behind.

I can't imagine the struggles you live with on a daily basis, knowing that at some point you may want to opt-out of this life, but I commend you for your bravery in facing the unknown and finding joy in the now of each day. In truth, that is all any of us can do.

Thank you for being so open and honest about your processes, your life, your feelings and most of all for just being you. Thank you.


Well isn’t that a fine conundrum, Ronni.
I, too, was considering the Death with Dignity law as an equal opportunity option.
$4K to basically OD.
Wonder if I can put it on my Visa card.
Maybe I’ll just go downtown and buy heroin, while I’m healthy, to squirrel away for that day when the pain becomes more than I can deal with.
I’m pretty sure it’s available on the street.


Ronni,
If you contact End of Life Choices Oregon, they will help you navigate the finances of the drug, there is assistance available for anyone who needs it. And they are available for your final journey in any capacity that you want or need.
And we are all so grateful for your candor with any and all topics, but especially regarding death and dying. This is your greatest contribution, since it reaches such a large audience. What a lasting and enduring legacy.
Carolyn in Portland, OR

"Wonder if I can put it on my Visa card".

Thanks Elle, that was really funny.

Good to find the laugh in such a serious and thought-provoking subject.

Have to agree with the poster who mentioned your 'greatest contribution...lasting and enduring legacy' ... and agree even more with your true wisdom re: 'all those big life questions; explorations coming down to piffle at the end. Just to let you know it's heartening to to me and I'm sure to others, to encounter your magnificent ability and willingness to face and speak Truth as you've found it in all its bad, good, ugly and beautiful. Thank you for this gift and know that your life, as it has been, as it is and as it will be, is most appreciated.

Here in Canada, they quietly brought in the ingredients to make secobarbital as a compounding mixture, called "Mixtura Nontherapeutica Pentobarbital” (applicable to Secobarbital). It is a compounding formula from the Netherlands. It is a much cheaper option and a compounding pharmacy basically creates the medication from the ingredients. Very few people choose self-deliverance here, they mostly use the option where the doctor actually gives you an IV with various medications.

Washington State also uses a cheaper medication protocol for the reason you have described. Not sure if it's available in Oregon. You can find the Washington State option in this document https://camapcanada.ca/wp-content/uploads/2019/01/OralMAiD-Med.pdf

Also in response to Betty Bishop, doctors and medical personnel in Canada, can bring up medical aid in dying (MAID) as an option along with all the other choices a patient has, hospice, palliative care, etc. The fact that they didn't means the doctor in question did not want to do so, not that it's illegal.

In Canada we are reaching 7% of deaths by MAID on Vancouver Island, so very high. I guess west coast people are the most proactive. We also do not have a six month terminal limitation. We have had a person here in Ontario approved with osteoarthritis, who had a ten year life expectancy, so not even terminal.

What a quandary Ronni; it's an enlightening conversation and interesting that we're able to discuss it here. I find it a little surprising that you weren't struck by this earlier, though. I've been close at the end of life for three loved ones now and quickly became aware of the challenges of helping someone old when the end was known to be imminent, but still indefinite. All of these were in states without Oregon's options, but good (with the emphasis on GOOD) hospice care is able to achieve the same end, and Medicare covers the cost. However, Medicare doesn't pay for nursing home care or a stay in another assisted facility, which can take a very great toll on family and friends of those needing such care , and the growing disparity of options for living, as opposed to dying, in advanced age is increasingly disturbing.

Pondering this reminded me of the scene of Sol's (Edward G. Robinson's character) death in Soylent Green, where he's had a glass of wine and whatever and is lying on a bed in a room shaded in orange, his favorite color, watching the giant surround screen as it displays scenes of a once beautiful world that he remembers, but is long gone. There is no turning back for Sol, who says that he has "lived too long," but he does have a good moment with his friend, played by Charlton Heston, as they share their goodbyes and express their love for one another. Maybe that's as good as it gets, and better than most of those who had long before been turned into soylent green.

I went to Youtube and watched that scene just moments ago and was astonished at the different perspectives it presents today. In another clip that came up on Youtube just before the one I was looking for, Sol is given two large volumes of a publication titled "Soylent Oceanographic Report 2015-2019." That report apparently contained information that had been suppressed by the government or someone in control, uncovering details on the death of the oceans, which is how the truth about the source of soylent green was discovered (the movie is set in 2022). I had forgotten many of the details of that film, but the fact that it was detailing the conditions it does 46 years ago, and that the movie is set in 2022 is giving me one big chill.

I think that when we stop caring about much of anything it will be a signal that it's time to go. When pain is the dominant thing in your life nothing else matters very much.

I am not sure that there is an experience to be aware of when we die. The body starts shutting down, but the person dying is not aware of it and when all organs stop it's just like turning off a tap. I am surmising this from watching my husband die. I could be wrong, as I so often am.

I thought I had reached the time to sit on the ice floe a month ago when there was no joy in my life and life was no longer worth the struggle it was taking to survive. Then I had a good night's sleep and regained interest in reading the book I had started. I felt better and inexplicably began to notice the small pleasures you recently wrote about Ronni.

I do know that I will stop caring again sometime in the near future but for now, I want to continue living long enough to see if justice will finally prevail ridding my beloved country of the scourge in the Oval office.

A few things I recalled while reading your post this Monday . . .

1> When to go? My Dad lived into his 90s. What kept him going where a> obviously inherited genetics, b> all of us reminding him, "you pass after you have completed your purpose and for sharing your life with all of us.". We were all happy with his eventual, restful, and without pain passing.

2> People do die in their sleep. Since I use a CPAP device I have heard many stories along these lines: 'When you read someone has died in their sleep it usually means they have/had COPD' - or in my case Sleep Apnea. A CPAP device may just prolong the inevitable!

3> Are you awake or conscious during a coma? TRUE STORY: This I have first-hand knowledge. A casual friend who happened to be the Chief of Staff at Kaiser had an aorta rupture and immediately when into a very deep coma. His colleagues kept him there with what they told me was, 'enough Morphin to put an elephant down!'. His many children, spouse, and friends visited him as he lay motionlessly there in his bed. His attending physicians slowly reduced his meds hoping he'd pass during their procedures. Now get this, surprisingly Graham came out of his coma! Though still terminal he related he heard ever word his children said as they dived up his estate. Then he passed.

4> Who can afford the expense? This last chapter in a book (perhaps "the Millionaire Nextdoor") I read decades ago had this line, "the last check you want to write is to the Undertaker - and it bounces." Now does that give any ideas?

Regards and look forward to fulfilling your purpose and sharing your life with those of us who remain stridently by your side.

Jim

Damn, well I guess it figures that only the wealthy can get assisted death.......for now, at least. Ronni, thanks for taking on another big topic, and like you, I've thought I'd get it both ways...........conscious death, but hold the pain. And am still hoping for that. I do believe that death is a big, very internal experience. I had one near death experience, and you bet I'd like to be conscious for the final one. I wish us all a fabulous, sacred, positive, beautiful and conscious send off to whatever comes next!

I wonder who is making money on the death-dealing drugs? The pharmacy companies? The state? I was shocked when I read how much it costs.

I have had depression off and on all my life, and at times it has been so painful that I longed for death. I've thought about ways to kill myself. But because I'm not "ready" to die, I have never acted on those ways and I'm glad.

I never particularly wanted to be "present" at my own death. And I always figured that I'd either be unconscious or overwhelmed with some kind of pain, so that I wouldn't be paying attention anyway. I also think that the brain creates a detachment and natural anesthetics to prevent us suffering much at death, if we are lucky.

Sheldon Newland, MD, wrote a book years ago called "How we die". I recommend it to everyone mortal! I think it is a real gift to humanity.

"We who are about to die salute you"

From Vera-D - “Also in response to Betty Bishop, doctors and medical personnel in Canada, can bring up medical aid in dying (MAID) as an option along with all the other choices a patient has, hospice, palliative care, etc. The fact that they didn't means the doctor in question did not want to do so, not that it's illegal.”

To Vera-D - I should have said doctors cannot suggest or mention MAID to a patient who is at deaths door. My friend was in hospital palliative care with Lung Cancer, a broken hip and a broken arm. She had been telling and showing her daughter she wanted to die for almost a week - before that she had written her obituary and had her toenails painted bright red! She was getting morphine on demand. I was with her for 3 hours the day before she died and she told me several times in several ways that she “wanted to go”. As I left I asked her if she was sure and she said “Yes!” I told her to speak to her doctor. I assume she told him the following morning, her daughter confirmed her wish and a few hours later, with her daughter by her side, she was “peacefully asleep”.
I attend a group of people with terminal conditions - it is called Living Well :-)! A hospice worker confirmed it would have been illegal for her doc to suggest he finish her life in any way. Two doctors have to agree her suffering should end. BTW - in Ontario if death is imminent the 10 day waiting period can be waived.
I also believe a doctor is legally obligated to send you to another doctor to discuss MAID if he doesn’t agree with it. Laws may vary in each province.

Yes, Ronni will leave a lasting legacy when her time finally comes, be it sooner or later (we all hope it's later as long as she feels reasonably well). Truly, that is no small thing.

Pain is an unwelcome intruder and takes much joy out of life as well as imposing physical limitations. If I had to get old and develop painful medical conditions as part of ageing, I would have wished to do so during a time of more enlightened medical treatment and less government overreach.

I intend to do all I can to make sure I have reserved the financial means to purchase end of life drugs if I qualify for the program when I'm ready to go. Affordability should be there for everyone.

Two other productions that came to mind while reading your post today Ronni are the 1973 television version of Bruce Jay Friedman's off-broadway "Steambath," and Julia Sweeney's "God Said Ha!" a film adaptation of her one-woman show. Both are excellent, funny and poignant productions looking at how life can knock us on our keisters, whether that's totally random or includes some divine intervention. I think they may be available on Youtube and/or DVD.

As an Oncology Nurse for many years the only thing I would add is that although one may decide to be as alert as possible during our passing at the end the organs can shut down quickly and we may not awake from a nap or our sleep time. A person can be awake and lucid and then suddenly unrousable. We don't always get a choice.
I really appreciate your sharing Ronni and it would be good psychosocial/medical learning for all those who are involved in end of life issues. Who better to teach what the individual
experiences along this final journey.

I used to say I just want to die in my sleep. What one doesn't consider, some one is left to find you if not EMS a family member. (That is what happened when our son died, found by medical person after window broken to get in.) So now I just leave the whole thing up to my God. Can't be burdened thinking about it.

From Paris I follow your blog. I told my wife over dinner about today's post and a brief history of your life. I know it is all brief and an illusion so I savor my experiences, my wife, and you, Ronni. I vote for going natural, for what it is worth. But not too soon, please. See my Facebook page for a fun photo.

I want good drugs for pain relief if I don't die suddenly.

Rosemary, so do I. But these days many of us can't count on it, unfortunately. There needs to be much more attention directed to the fate of patients living with incurable pain who use medication responsibly. We are collateral damage from the "opioid crisis". People in their 70s-80s+ had nothing to do with creating the problem, but we sure as H*** are or will be suffering (literally!) the consequences.

I need to state clearly that I do not want to spend the remainder of my "Golden Years" in a drug-induced fog, but there has to be a middle ground that provides sufficient pain relief so that one can remain as functional as possible--and perhaps experience a little joy, as well.

My father did put the drugs on his credit card when he used medical aid in dying in California on 6/28/19. I think they cost about $2,500. He drank potion #1 and had 30 minutes to hang out with us, resting in his chair, hugging, saying goodbye, laughing, looking at his garden, listening to his favorite music. He was fully awake during that time, and fully present with us. He took potion #2 and was asleep/in a coma within minutes. He was dead less than 30 minutes later. It was magnificent and on his own terms.
I guess you will know when you are ready to make your decision, Ronni. My Dad did: he was ok one day and ready to go the next.

When I got sober in the 1970s, I spent a LOT of time and effort trying to learn how to be alive one day at a time. It's an invaluable thing. You don't have to be a drunk to benefit from it. It's perfectly true that the present is the only time you can actually get anything done. I've gotten fairly good at it most of the time. Still, I do have some anxieties about dying.

The thing is, we really only HAVE today. The Great Quake could come tomorrow in the wee hours and I could get crushed in an instant. Or I could get hit by a drunk driver. Or--one of my favorites--I could get killed by a falling zebra. It's possible: zoo transfer, engine trouble . . .

If I'm told at some point that an unpleasant death isn't far in the future, I'd be happy to be put to sleep. I watched it done to my darling dog Steinway. He went to sleep. He made a funny little noise like a snore. I said to the vet, "What's that?" and he answered, "He's snoring." They gave him the second shot, and his heart stopped beating in a minute or two. It was utterly painless. Seems okay to me. That didn't cost me $3-4K, either, but I probably can't find a vet to do it. I'm not insistant on being awake for my own death at all. Meanwhile, I'm okay with one day at a time--it's kept me sober for almost half a century, and life is MUCH better lived in the present. I hope you keep doing it, Ronni--you're a treasure we want to hold onto for as long as possible.

P.S. For those with the right sense of humor, here's the fabulous SNL clip, "The Death Toilet:" https://www.youtube.com/watch?v=_9BjJkqybz8

I don’t want to experience my death in any way. In my sleep would be nice, but unlikely. I would like drugs to ease me into sleep.

Not being in an assisted death state, I been thinking of how to take care of business before I ever had to go into a nursing home. Or to die while you could still take care of business or your own.
No problems yet with my health, but I want to be prepared.

Street drugs yes, if I knew how to do that.

A gun...too much a chance of maiming, and drugs fail too often.
So I’m thinking tall buildings or a tall parking lot of several stories...

Really wish I could either move to Canada, where evidently you don’t have to be terminal 6 months out, or the laws would change for all states to be fair and give us all our rights to our own end.

I’d say write a check or charge it...if it bounces, so what.

Kate’s story should be an awakening. Our pets are allowed death with as much ease and dignity as medical science can provide. Why? Because we love them and care about them and the laws are on our side. We also have the help of caring veterinarians who will do the job for a reasonable fee. We are allowed to make this life or death decision without interference. But we humans are forbidden to have or can’t afford the drugs or the help that will lead to an easy death for ourselves in our own time and on our own terms. There is something terribly wrong here.

Well now, isn’t that a dilemma! What a kick in the head — how to be conscious of the end, but maybe that’s not possible with the procedure for facilitating the process as you describe it. Seems nothing is simple in either life or death. Perhaps you will have the desired awareness, as I would like to have for myself, too, but we just won’t know until we go through the experience.

Consciousness really isn’t understood and there has even been some question about other neurological interpretations recognized today as indicating brain death. I am aware also of several incidents when individuals in comas recovered to report an awareness level the medical staff didn’t realize they had.

I am surprised to learn the meds are so costly, but guess given how the Pharma companies operate I should have known they wouldn’t be inexpensive. Guess I should explore some of the specifics in California’s legal provisions since it may be more complicated than I thought.

I’ve not explored this, but I wonder if insurance policies treat payoffs differently based on what constitutes suicide versus legally ending one’s life?

I've had friends who knew when it was time to go and others who seemed never quite able to know. Maybe part of our task in living is to become that self which can know ... I wonder.

As so often Ronni, you make me ponder.

Ronni, you are such a good writer, and your blog has been a touchstone for me for years as I have been dealing with this aging thing. Last night I dreamed about my grandmother, a second generation American whose Norwegian lutheran grandparents emigrated to Wisconsin in the nineteenth century. In my dream she was an old lady, but no older than I am. I told her I loved her, which was most likely a wish fulfillment on my part, because I doubt that I ever said that to her in real life. We weren't brought up to share emotions like that.

My son and his wife (a naturalized citizen) are in New York with their seven year old daughter, a first generation American. Izzy, my grand-daughter, wanted to see the Statue of Liberty and her parents thought "what better time?" I'm excited for them as they take that family adventure.

When my time comes to die, I too hope that I'll be lucid and pain free, but I don't feature bringing the younger generations into my passing. Your post today has raised that question for me. Who will be with me when I go? Like so many situations, I'm pretty sure the answer will be apparent when the question comes to the top of the list. Love you Ronni.
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