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Living While Dying

Snoopy-cartoon

As much as I like the Snoopy cartoon - which is all the more admirable for its simplicity – dying is, nevertheless, more complicated than that.

Some people die quietly in their sleep, others die suddenly in, for example, a traffic accident, while another group of us slowly dies while being treated with drugs meant to extend of our lives even though we know the disease will eventually kill us.

Twenty-seven years ago, my mother chose no chemotherapy. She didn't want to be sick or drugged during her final months of life. I chose differently. So far the chemo side effects are minimal and the professional guesstimates of extended life sufficiently long to make the treatment worthwhile – at least, to me.

You might have guessed that I have put a lot of thought to this interim period. Back in June 2017, when I was first told I had pancreatic cancer, I made a bunch of decisions at least two of which have proved fruitful.

  1. Spend every day living to the fullest extent I desire

  2. Talk about my “predicament” as much as I want

For number 1, I have surrendered to life and living as fully as possible because what other choice is there? I don't have the first idea of other possibilities.

One thing that gets in the way is that I feel apologetic when the simple life I lead comes up in conversation, when someone asks about my bucket list (none) or fulfilling lifelong dreams, etc.

I don't know why I'm touchy about my life and I'm working on figuring it out. In addition to having cancer I'm old, nearly 78, and I'm slower than I used to be. There was a time when I tried to hide that.

Nowadays I have no difficulty behaving like an old person even though American culture recognizes (begrudgingly) only old people who act like younger adults.

The amazing plus side of number 2, talking openly and often about my cancer and about dying, is that when I do it, it is easier for the people I'm speaking with to do so too. And writing about my predicament on this blog has freed up readers and friends to leave messages that stick with me every day, long after they are said.

My friends Gail and Jim wished me “a safe and harmless journey.” Isn't that lovely. And not long ago, another friend, Wendl Kornfeld, signed off with “May you live long enough.” Both of these being beautifully inspiring.

But we need to talk more about dying until it becomes a normal part of life. It wasn't always hidden away, you know. Until 100 years ago or thereabouts, most people died at home among family and friends. Even the children were involved.

Personally, I am fascinated with these final weeks and months of my life, eager to let myself follow natural inclinations to wherever they take me.

Palliative care physician and author Kathryn Mannix also believes it is time to break the taboo surrounding death, as she explained in this March 2018 video from the BBC:



Comments

In order to see the video, I had to go to the BBC site and search on Mannix. I'm glad I did.

A process that would have been comforting to have known as I've lost family members. Thank you, Ronni. I wish you that same peaceful ending when the time comes. Until then, please know how much you are needed and loved here with us.

Thank you, once again, for all of your 'food for thought' Ronni. I too, enjoyed the Mannix video.

Your words today made me think of Ashleigh Brilliant's clever epigrams from the 70's. They often come to mind in my own dwindling days.

Thus poking up through the piles of memory is today's...
"I May Not Be Totally Perfect, but Parts of Me Are Excellent."

If we have made it this far, we all pretty darned "excellent."

Thank you for passing this on. Comforting.

Regarding the video: I've tried it on three browsers and it plays as it should. I can't account for janinsanfran's experience.

My mother's death a few weeks ago was greatly eased by the hospice workers who came into the memory care facility where she had lived since last April. These individuals became an integral, yet almost completely unobtrusive, part of her end of life experience. Hospice even brought in a different bed which seemed much more comfortable than the standard beds there. One thing that my mother enjoyed since becoming able to afford it in later middle age, was a comfortable, warm and cozy bed. I don't know why everyone can't have the more comfortable bed option from the time they go into a care facility, rather than just the last few days, weeks or months of their lives, but I'm sure it has to with the cost being covered by Medicare when hospice comes in, versus private pay otherwise. I'm sure that those who can afford it, and don't mind paying extra could have the more comfy beds from the start. Usually when money is no object, almost anything can be arranged.

The three hospitals in the city in which I live, Rockford, Illinois, recently collaborated to bring in a speaker and have a panel discussion on end of life care and concerns. The keynote speaker was a critical care doctor who made a 180 degree turn from doing everything possible to extend life, to becoming an advocate for palliative care. Dr. Jessica Zitter wrote a book about that paradigm shift in "Extreme Measures: Finding a Better Path to the End of Life. " It was an extraordinary discussion and I was so glad that I had braved the cold and ice and gone out for this.

Having been so deeply involved in end of life care for my in-laws and my mother, and having explored so much about this topic over the last decade, I was very surprised by how little awareness there appears to be in my community about this topic. I think I just assumed that most people, by a certain age, have had experience with the death of someone close to them and might have informed themselves more broadly on things related to that experience, but apparently that's not the case here, and there were so many questions and comments following the presentation, that the event was extended an additional half hour.

Perhaps it's a matter of reaching critical mass, or a tipping point, and the baby boomers have provided the numbers to move things along in this discussion, just as we've done for so many other topics over the last few decades, but whatever it's taken, it's good to see this movement away from the inevitability of pain and suffering at the end of life and into enlightenment. Thank you Ronni for continuing to be part of this.

I’m sure you are aware of Katy Butler who has a new book, The Art of Dying Well.
Excellent resource for everyone. Her books and her Facebook page, Slow Medicine, address these topics. Highly recommended.

Oh Ronni, how did we all live without you in our lives? This hit especially hard today on the first yahrzeit of my dear cousin, Bill. I miss him like crazy. Only 6 years older than I, it was at his bar mitzvah that I learned the Bunnyhop and it was with him that I shared so many laughs.

When dear friends were dying of AIDS in the '80s, I got better at talking about dying and death. I had to; there wasn't much time and to not acknowledge it seemed cruel. It's so easy to revert to the platitudes that are said when someone is dying. It exhausts me. Then I wonder if it is up to the person who is dying 'right then' (as opposed to all of us who are dying not quite yet) to say what they want in the way of conversation. So many want to protect others from the realities, don't they?

To you, Cathy J., thank you for sharing your experience. May your mother's memory be only for a blessing.

I do hope all of you can find a browser to watch the video .. or read it, so well-captioned is it. It is sensible (so British!) and helpful and comforting.

Thank you Ronni! Spot on, as always. Yes, I catch myself or rather acting more vital, more physically strong than I really am...........I just wrote in my journal, that in this, my 76th year, I will work with not feeling ashamed of my age related, normal challenges. I sometimes feel the need to show that I am okay, am managing, perhaps especially as I have no living relatives. I don't want to spend whatever time is left hiding out. Now it's lovely, and often the case that I do feel vital, like to laugh and have fun with others." But to thine own self be true. You are so right, that the elders who are admired, are admired for being (or acting?) YOUNG. Scheesch. Okay, I'm going to be bringing up growing old and dying a lot more.
Thank you.

Lovely video. I sincerely hope her description is true for most people.

I love you, Ronnie.

The culture we live in insists that “living to the fullest” means an incessant pursuit of experiences. One MUST travel in retirement. One MUST attend cultural events. In some circles, one MUST volunteer or be politically active. The idea of a bucket list is another piece of that pressure to do, do, do.

After a lifetime of working and raising a family, I am able to live fully the way I want to. Quiet days at home, enjoying morning coffee with sweet hubby, walks and classes with the active young terrier adopted in a moment of weakness in 2017, cooking when I feel like it. Watching travel shows from the comfort of the couch is ideal for us. No flights to arrange. We read aloud, and hubby takes photos and turns them into gorgeous art on the computer, just for his own pleasure. It’s been five years now, and we are not tired of it.

There are little ways to be helpful that don’t register as official volunteer work. I take a visually impaired neighbor grocery shopping on senior discount day, and read to a disabled friend via FaceTime several times per week. We have a private book club for two. I spend time with dear friends as they, and we, lose friends and family members.

My paternal grandmother once commented on how annoying she found the recreational staff at her senior residence. They were so worried that she didn’t participate in the (to Grandma) condescending song feasts and games. She kept saying that she was finally able to do exactly what she wanted.

Many of the assumptions people have about how we must spend our time, how we must respond to losing our parents and such are based on news reports of studies, not experience. Everyone wants to seem helpful, but help does not come from a therapeutic attitude based on assumptions, it comes from listening.

I love that you are doing it all as you wish, Ronnie.

Ronni - All of us are with you. Turning each page as this storybook bears out. Page by page. Step by step!

Gail and I applaud your courage and are proud we met one fine day. Know you aren't alone. Your closest friends are here.

As you say, "Spend every day living to the fullest extent I desire". Rave on! Rage on!

Dyland Thomas said:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Ronni, as always, thank you. And thank you, too, Elizabeth above.

My eldest daughter is dying comfortably at home, under the care of Hospice, and surrounded by her husband, children, a couple of friends, others who come in and out and my other daughter, who is a nurse. She gets all the pain meds she needs, and anything else she asks for. Before we left, my son and I reassured her that she would just slip away into sleep when the time came--as the Hospice nurse had told us. I am so grateful for this. I wish I could be there, but I cannot. Every night, my other daughter and I FaceTime, and I get a report on the day.

It is a great relief from the purgatorial period of waiting for a diagnosis while she slipped farther and farther into suffering and weakening. I think we knew the truth before it became clear. Before she slipped into incoherence, she was fairly matter
of fact about her process, though she has cried a lot about leaving everyone. I cannot express what a comfort it is to imagine her in her soft nest surrounded by "my people."

Someone wrote in the "comments," and I can't find it, about being in the middle of the diagnosis period. I wish him well. I think that is the worst.

Thank you for the video. I cringe whenever I hear "passed away."

Wonderful as usual, Ronnie. The thought I take away is "Dying is normal". Just like aging is normal. Revolutionary thoughts in this society. It was also a struggle for me to admit I wasn't what I used to be physically, and in my family's Puritan way, I blamed myself for having been lazy and careless for not having exercised and kept up my strength.

Today I am blowing all that a huge raspberry!

The video reminds me of my mother's death. She died at home with we four kids trying to take care of her as best we could. There were slip-ups and disagreements but I think it was okay over all.

We were lucky to have the head of palliative care in that city visit and advise us. At a certain point she said that whatever we needed to say to our mother we should do it now, because soon it would be too late.

Our mother just gradually slipped away from us as described in the video, we were left caring for her body with very little mental or emotional interaction. It seemed to take a long time, but we were in a space with her where time became meaningless.

I'm glad I had that experience, death is such a scary mystery in our culture. I'm glad you are speaking out about it.

I enjoy your honesty about yourself and the world. You are the reason I started a blog ten years ago. I read an article about you and elder blogs in the NYT. I did not know about blogs then. I sent you a story that you published. But I had more stories to tell about growing up in Paris and so started a blog in March 2009. The blog turned out mostly to help my husband’s memory, and it did. Now that he is gone I can start writing about my recollections. I thought I was too old to write a blog then. Age is a state of mind, our minds I think. I told my French cousin my husband died 4 months ago at age 80 and she said that he was still young – in her family people live to late 90s or early 100. I want to thank you for placing the idea of a blog in my mind as it helped me considerably to fight isolation during his long Alzheimer’s illness. I think a blog gives one the incentive to think about others, our blogging friends, what to tell them, to think about what to write next, and that helps staying engaged. Saturday I had a very scary journey from Georgia to Tennessee and got through it thinking I’d write a post about it and taking photos (I did.)

When my husband died we arranged a “green” burial for him – nothing artificial and the whole family, including my little grand children, had a shovel to turn the dirt back on his coffin, it was a family affair as they did in the old west. It helped that I could write a post about it afterwards. I am 78 years old just like you and enjoy doing what I want now that I am no longer a care giver. I believe you have helped many readers to stay vibrant mentally by having blogs like yours and reading your blogs which is so affecting. You are an inspiration, and guide us to have happier lives and to talk naturally about accepting the inevitable. Death is a subject we cannot evade. I also enjoy your blog because you do sound like a Buddhist (which I am)– not clinging to emotions or wrong or false ideas; not grasping at regrets and bad memories. Letting go and enjoying the moment. We all thank you. Hugs,

Having just returned home from a vacation (Tee Hee) in a nice rehab facility after another bad fall I find I have lots to say on this subject, but not the energy to do so. A couple of things stand out.
Get out your Medicare book and find out exactly what it does, or does not cover and re-evaluate your insurance. I have Medicare Advantage and thought it would cover you long enough to recover from a severe illness. To my shock, it will only cover 20 days PER YEAR in rehab. After that you are on your own. In my case I had to return home unable to do some things for myself when alone (as I am right now) Thank goodness my daughter was home during the weekend able to help me over the weekend. I do have Home Help coming tomorrow, but she will only be here 2 days a week to help me shower, etc. Nights are a living nightmare as I am on my own with several problems. The nurses sympathized but the god of the insurance company said I was able to be alone and the old "bottom line" was more important than my medical needs. Please, please continue the fight for getting the profit out of medicine.

I have been in rehab 2 times before and this was the one that made me think that palliative care may not be the comforting rest phase that I had envisioned. If you are drugged to the point of sleeping all the time I suppose the end of life would not be one of pain and suffering, but otherwise? Can our dear Hospice friends help me believe in a peaceful end of life? Right now I am not so sure.

Sorry for the downer about the comforting video.

And when I die please do not say "She passed or passed on" I have always wanted to ask after hearing that, where did she pass to? Death is just that - death.

I didn't know that you are the reason that Vagabonde started her blog, which I have enjoyed tremendously over the years. I watched the video and love the sweet calm voice of Dr. Mannix. My mother's end was just as she described: in a coma for about a week, she began to slip away, gently, as we, her children, took turns spending the night in her room. It was I who called everyone in when I noticed the change in her breathing. She seemed totally at peace. It was a truly wonderful experience to have been with her as she slipped away. I will never forget it, and it wasn't scary in the least.

I, like many of you, am not afraid of death. It’s the dying process that concerns us, and mostly we fear pain. That doesn’t concern me, because I believe pain can be managed. But, I would also like to be able to experience death, not be medicated to the point of oblivion. And I know that it’s possible. I have been privileged to be with people who have (I believe) experienced their deaths.

My Mom was hospitalized after emergency heart surgery, and was certainly very ill, mostly bedridden. One day, she asked to walk to the window and look out. (She hadn’t done this before.) She wiggled her bum, and then went back to bed. She died a few hours later. My Dad enjoyed a beer and reminiscences the day before he died (he normally didn’t drink beer). The next day, he reached out his arms for help to sit up. He died, leaning on my shoulder with my brother and sister holding him too.

A friend died at home with family and friends around her. She told us “This is it.” just before she slipped into a coma and died a few short hours later. Another friend had meaningful conversations (albeit a bit garbled) the day before he died. Both of these friends were in their early 50’s.

There is no doubt in my mind that they knew how close they were to death. And, in the case of my parents, certainly my Dad, they experienced it. And it was peaceful and gentle. And although I don’t think I feared death before, I certainly don’t fear it now. It will be a new experience.

It's such a comfort - this good, honest talk about death. Thanks for making it possible, Ronni.

Dear Ronnie, while your posts are always engaging and often refreshingly humorous, this one hit a ‘pet peeve ‘ of mine. I am a retired hospice nurse and your video from the Dr was so very real, yet so very many people (both family members, close friends and surprisingly even patients themselves) have such blinding fear and anxiety about dying that they cannot find the peace, enjoy the good moments of interaction or say what their hearts tell them they need to say to each other. So sad, but it was my all consuming work to chip away at that wall and each time I assisted a family in the dying process, reaching a state of open acceptance was a huge victory! (For everyone) I also agree with other comments, it is dumbfounding that older folks can get to that place and be so oblivious to what may lie ahead. It’s akin to working a career and never considering or preparing for your retirement. It is coming, regardless of the preparation, but oh so much better if one consciously prepares.
I have only been aware of and following your blog for a month or so now-thanks to a much older friend but know you have enriched and stimulated my thinking, which is always a good thing.

IMHO was a calming and beautiful explanation of the death process. My
family, farm background from Idaho, believed in all members participating
in the process. Our last death was in 2018, my brother Jay. We all gathered
and watched, visited. Death was not the horrible experience we are taught to
experience. It was as shown in the video, a gradual increase of unconsciousness leading to total unconsciousness. It is the sum of life.
B

As I've said before, it's not dying I worry about. At 82 I'm pretty much O.K. with that-- although I would not want to leave my 89 Y/O spouse and our 2 senior cats alone. It's HOW I get there.

Many elders in the U.S. will have very little say or control over our end of life unless we don't wake up one morning or keel over on the kitchen floor. We'll end up in a hospital or other "care facility" sometime during the last 3-6 months, where young people have been trained to "preserve life". Sorry to be Debbie Downer, but for too many of us the process of death will be a long, slow, lingering, downward slog and loss of functionality (often in addition to untreated physical pain, thanks largely to some 20- and 30-somethings who use and abuse pain medication recreationally). I do not look forward to that--at all! Who in their right mind would?

I have the legal documents in order, including a POLST and a very specific healthcare directive, but that doesn't mean my wishes will be honored.

That was so simply, perfectly lovely. ...More of this kind of wisdom, please!!

For some reason as I get older, I have a dread of death that I did not have when I was younger. Thank you for posting this video. It made me feel more comfortable - like death was a gradual, quiet fading away of the senses until the person was in permanent unconsciousness. I can handle that, I think.

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