Conscientious Objector to Extending Life at All Costs!

I'm so grateful that somebody with credentials finally said this! This is my stance also. Happy to see that there are other "conscientious objectors" to modern healthcare!

Ezekiel Emanuel — an oncologist, bioethicist, and health-policy expert — wrote a powerful essay for The Atlantic about why he will no longer seek medical treatment after he's 75. 

"Living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived," he wrote. At 75, Emanuel says, he will become a conscientious objector to the health-care system's life-extending work. "I will need a good reason to even visit the doctor and take any medical test or treatment, no matter how routine and painless. And that good reason is not 'It will prolong your life.' I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative — not curative — treatments if I am suffering pain or other disability."

I already treat doctor's visits like this. I find that they don't like it and want me to have this test and that treatment just because I've reached a certain age. They "fire" me when I won't come in every time they want me to. Guess I need to thank Dr. Emanuel for the term "Conscientious Objector" to most types of health care! I WILL be smart and have that "Welcome to Medicare" examine that is funded by Medicare...but I will also decide which of my "conditions" to treat and which to work toward resolution with behavioral change...and which to ignore (at my own peril, I know...) So, OK, I'll probably get fired by a doc again. Perhaps they can appreciate my viewpoint if I use this terminology.

For the rest of the article quoted above, please see www.vox.com/2015/1/11/7517211/end-of-life-care

More Life in Me...

I have more life in me than my mother, who died a long-sought and in the end, merciful death at age 59…but I look forward to the end of life for different reasons. She made decisions, both conscious and unconscious that kept her short life uncomfortable if not agonizing, almost featureless except for her pain and far, far from her control at every stage.

            I recall as a child making a conscious choice “not to catch” the sicknesses that kept my mother bed-bound much of the time. I didn’t know the names of her ailments then, but among them were: migraines, insomnia, hypertension, diabetes, various addictions with the accompanying disorders those behaviors brought and finally, debilitating and fatal heart disease.

As for me, so far, so good.

            When she died and I saw her body at the funeral home, I realized that she also had carpal tunnel syndrome. Her hands were curled inward as if she, who transcribed court reporter notes, were fixed for eternity in the downward stroke of a typewriter keyboard. She didn’t know she had carpal tunnel; nor did we. So much of her life was endured in ill health that the unceasing ache of carpal tunnel with throbbing thumbs and burning forearms must have blended into the other constancy of her pain.

            Like my mother, my career is based on having my hands on the keyboard. Many years ago I worked as a temp for hand surgeons, transcribing their immense dictation on every patient. Ironically, as I transcribed the details of surgery on hands and arms crippled by carpal tunnel syndrome and the requisite surgery and rehab, my own hands began their long decline into my own version of the typing-tinged angst of carpal tunnel.

            Proud as I am of “not catching” her other ailments, I notice that, along with carpal tunnel syndrome, I do have more and more minor aches and pains as I approach old age. No doubt my mother had some of these same arthritic degeneration, again, unnoticed in her extraordinary overlay of almost endless agony. My modest aches and pains are now a feature of day-to-day life, remitting reluctantly when I do yoga or lounge in hot water. Ice packs, naps and aspirin help, too.

            As I age, I feel a deep kinship with my mother. We were blessed to have made our peace long before she died and we’ve grown closer still over the years that she’s been gone. When I look in the mirror, I see her body, grown lush with the love of food and the act of eating. My father often said that Mother dug her grave with her spoon and I recognize similar behavior in myself. Well trained in the indolent lifestyle of a Southern Belle by my very fussy and impossible to please grandmother, I find that despite my best efforts, some days the only activity I get is walking to the refrigerator or pushing the microwave start button.

            And though I'm older than my mother was when she died, I’ve not yet been called to the other side, so I’ve got work to do here. I’m grateful that there are ways for me to work with those who are dying; counseling a grieving acquaintance or calling a stranger to discuss Hospice care. Being there for a friend who must have her assistive animal put down or hearing an acquaintance’s last happy words as she recognizes the afterlife that she didn’t expect. I live a life laced with death. And happily so. It is the work I am on earth to do. Working with death and dying…and writing about it.

            A book I read – Dancing Naked at the Edge of Dawn – by Kris Radish, features a character who discovers that “…the secret of life is really death…” That phrase sums up my philosophy on death. I’ve also seen a reference to Friedrich Nietzsche for a similar quote.

And it strengthens my belief that death brings us the most important lesson we’re here to learn…or else it wouldn’t happen right at the very end.

Done with Death?!? I Think Not...

Recently I took all my death and dying books, pamphlets, brochures, archives and articles and placed them at the back of my closet. It’s symbolic, but also a statement of fact: I’m done with death for now.

Not to say I won’t help – or listen to – someone who calls with questions, or make a referral to a hospice or the national Compassion & Choices organization. I will always do those things. But I’m done with setting up events, hosting them and encouraging people – mostly strangers – to talk about death.

Of course, I’ve already gotten all my final paperwork done, so I can afford the luxury of playing with a new beau rather than having to have those heart-felt conversations. 

I’ve done all that…

Have you?

If not, let me encourage you... 

(OK, so I am still at my death work, but only peripherally) 

...to fill out your Advance Directives. A Healthcare Power of Attorney, perhaps a Mental Health Power of Attorney, your Last Will and Testament (which is basically just making your wishes known…you’ll need further paperwork if you want things of value to go to the appropriate people with fewer complications.)

A good place to start is with the Five Wishes document. I’ve heard arguments both pro and con about it. It’s quite “user friendly” so people will actually do it, and you get it notarized, so it’s legal – at least in Arizona and several other states. But an argumentative relative can undo all your planning, so make sure you’ve spoken to them, too.

It’s not easy to do. But once it’s done (and reviewed every five years or so), you can put your death and dying fears and phobias at the back of the closet, too.  You can enjoy the remaining days, be they few or many, knowing that “if I die today”…all is well.

I have a friend whose body is shutting down. She has finally reached the place where she feels that “if I die today, I’m as happy as I can be” phase. I’m very happy for her. I feel that way every day.

So do your death work. Get it done, share it with docs and family and friends. And let it go. 

Live every day as if it’s your last…

and your first…

makes life lots more fun and fulfilling.

My memoir...gotta write this stuff down!!

Here is the "forward" to the book I'm finishing now.
It's a memoir that tells my stories briefly - literally - with Haiku poetry.

Memories, Mood Swings and Miracles^©

My much-abused mother did her best to civilize two savages: one a true savage, all that remained of an abused depression-era man turned warrior: wounded warrior. And one a savage by proxy…my brother; my “Bubba”… beaten into the shape and form of a bully boy by our dad’s brutal hand. Family secrets.

This, in the mid-20^th Century, when conformity was required. Mama, who also felt dad’s fists, did her best.

She also tried to civilize her tiny Heathen girl child. A born Pagan, I was confused by the rules, terrified by the violence all around me and always, always seeking to escape to my beloved desert, to books and to my cats.

A sun-burned scientist by nature, a smarty-pants show off who learned nothing of scholastic discipline and thus, never plied the scientific trades, I excelled in classes, experiencing reading, writing, math and biology as easily-described givens in my worldview. Science I understood. Emotions, connections to others…not so much.

My brother and I were neglected throughout our young lives and I found myself in situations that caused me harm, both physical and sexual. Abused by various friends and neighbors, I grew up highly sexualized. Always the rebellious little Heathen, I contributed willingly to the budding sexual revolution, eventually at the cost of my self-esteem and mental health.

My role models included my grandmother who embodied the angry, entitled female, illustrative of the character impoverishment of southern gothic novels; my mother, who was beaten down by life…and by my dad’s furious desire to make her be well; and my belligerent, violent dad, who, gratefully, mellowed with age. Even at the end of his life though, he still demonstrated hints of the scarred soul, all that was left of his spirit by The War.

Because in our house there was only one “War” and that was World War II.

Post-Traumatic Stress Disorder: we all have it. Disconnected from everyone by fear and family secrets, our PTSD drove us (high-functioning dysfunctionals that we are) to prove ourselves by working too hard, ignoring or seeking to control those who love us (as we had been similarly treated), worshipping work, seeking approval and, at least in my case, continuing to abuse sex, drugs and alcohol well past adolescence.

Fortunately, my circumstances led me to become involved in Twelve-Step recovery, which brought me around to many other venues of self-care and helped me overcome my addictive behaviors. With a family full of deep gratitude, my parents also found the Twelve-Steps and the recovery therein.

My mother died young, only five years sober. Daddy, died sober twenty years later. We all became good friends in recovery, amends made, forgiveness granted.

That’s the miracle in the book title.

Watching my dad soften, watching my own parents discover and learn to love each other in middle age.

Miracles.

Happily learning that I – a dysfunctional adult child of alcoholic parents – was not alone …though let’s face it, still and always unashamedly eccentric!

There are family photos to accompany some of the poems and some go unillustrated. There are places you will be called upon to see the images behind your own eyes and some places where there is no way to show the pain; images nobody needs to see.

Then there are images created by loving friends, as noted in the acknowledgements.

Which brings me here. Now.

Practicing that hard-won discipline by writing my stories… 17 syllables at a time.

Bearing the unbearable...

A friend and I were in conversation about a business subject when she reminded me that her grown-up son had died recently in a motorcycle accident. Although I had sent a short condolences note (via email)…I had forgotten. How could that happen? How could I have forgotten something so traumatic to her and her family so quickly?

Because my mind was protecting me. As a mother I couldn’t allow myself to contemplate such a thing. Even though my daughter and I don’t see each other due to distance and estrangement, she is alive. I grieved my way through her countless rejections and even focused on the roller-coaster ride of estranged parenthood in my memoir for a chapter or two, but I heard her voice not that long ago. And it was a pleasant conversation. Alive. Gone from me physically, but present on earth.

Though my friend and I were in the midst of discussing other things, she asked if I’d done grief counseling in my work with death and dying. Not as a professional, I told her, though I do “grieve like a pro” as I mention in my memoir:

I can work with Death

Tender heart, but tough enough

I grieve like a pro

And being “tough enough”, I know, is how she remains standing. We reach the age where things knock us down, but no longer hold us in an eternal grip. In our 60s and 70s we learn that we can muster the courage to stand back up metaphorically, though we may collapse several times before we get our feet under us…we keep getting up. It’s impossible to explain to young ones who can’t help but feel that every knock to the back of the knees is unbearable…bear we do. When our life expectancy is down to single digits according to the actuaries, we soldier on, shouldering a lifetime of grief, some of it searing us with every step.

Some learn this lesson a bit earlier than others, but it seems to be a design of nature to bless us with this ability to bear the unbearable in later years. I’ve even seen notations in death and dying literature that people who live very long lives are specifically able to withstand grief better than most. Genetic adaptation for long life.

Personally I’m not seeking a long life, though I am good with grief. Approaching age 65 I am happy, content, in a loving relationship and satisfied with the scope and nature of my life. But I work part-time helping folks who are older than I am find resources…and I promise…I have no intention of living as long as some of them. I will be done with this earth sooner rather than later.

My lack of fear of death makes me good at the bedside of those facing death and perhaps even gives me an ability to counsel – mostly just listen – in grief situations. And so I will offer to listen, to lend a shoulder or an ear. But I thank the gods that my child exists, albeit far, far away on another continent and happily content without me in her life. Still, I’ll be here when my friend calls. I’ll help her bear the unbearable. It’s the least I can do.

So Many Questions, So Little Time…

My dad started having strokes about four years before he died. The first big one damaged his eyesight but he could still read what was on TV (across the room) without glasses whereas I could barely make out that there was a TV without my glasses, no stroke necessary. Even without his full faculties, he was still the guy in charge. 

Alas, another stroke a year later took his ability to reason, but somehow made him quite cheerful; jovial even. But it also opened the doors to all the questions he’d always wanted to ask, or felt compelled to ask.  Sometimes over and over and over. I told my brother that Dad didn’t have dementia. He just had a lot of questions.

I can relate. My first few years on earth felt like that. I could not figure out what was going on at my deeply dysfunctional home…and nobody else seemed to know either. I felt I should be doing something to make things feel better, safer; blaming myself for everything as children do. So I asked a lot of questions:

“Why is Mommy crying?”

“Why is the kitten laying so still after I gave it a bath?”

“Why is Daddy hitting my Bubba?” 

“Where is my Mommy?”

“Why is Nanny touching me like that?”

I got no answers. Shushed at best, slapped or threatened more likely. Or ignored. I certainly had no voice. I’m sure lots of kids feel like that at some level. But there was danger at my house if you didn’t know what was going on. So questions helped distract me and, on occasion, the perpetrators. 

I saw that in my dad toward the end as he strove to figure out what was going on.

His efforts to question everything seemed to be focused on “Don’t notice that I’m dying…” but I wouldn’t let him off the hook. I talked to him about dying. It’s who I am. I talk to everybody about it.

So there he was, my big, strong Daddy. Unable to take care of himself, or as he had once said to me, “I never thought I’d be unable to take care of myself…and you.” We had become friends in later years. I knew he loved me and wanted to make the world better for me. His way of making amends.

And his lovely, cheerful demeanor toward the end was nice, too. For the first time ever, he allowed others to take care of his needs. He was, finally, the beloved child in that role. My cousin, my aunt, the staff at the nursing home and the hospice angels…they took good care of him, even if they were smiling at his antics. Or frowning at the perpetual questions.

He didn’t stop. He asked questions until the last moment.

I, on the other hand, learned to stop questioning, just to be silent and as invisible as possible. It was a survival technique when I was a child. In the Twelve-Step Program of Adult Children of Alcoholics (and other resources), that’s known as being the Lost Child. It’s a role I used to stay safe, or at least as safe as I could under the circumstances of my young life.

As with many challenges, of course, it also was a gift. I learned the value of solitude, which allowed me to blossom as a writer. I use that mechanism to ask myself – and the Universe – questions. And more often than not, I find answers on the paper, or through the keyboard.

I have fewer questions now. Not that I know all the answers; just that I’ve reached the point in life where all the answers seem to be: …and so it is.

By living the best life I can, being helpful where possible while maintaining self-care, I’m almost certain that I will have far fewer questions at the end of life than my dad did. I wish the same for us all.

10/25/2014 11:48:00 AM Darby named Hospice of the Pines Hometown Hero

Deb Darby receives the plaque for the Hometown Hero award. By Julie Keeney This month's Hometown Hero award goes to Deb Darby for her long-term efforts in bringing awareness of the need for end-of-life planning. Deb has been an advocate for seniors and for hospice in our community along with being a volunteer for several years with various organizations to help our seniors with life-changing issues. Deb stated, "Hospice is the part of the healthcare system that gets it right." She is committed to helping anyone facing end-of-life decisions and planning. When asked why she does the work with death and dying, Deb's answer was, "Death was part of my life early. I lost numerous friends within 10 years after high school for various reasons and it was a real eye opener." Deb knew even then that talking about death was critical to overcoming fears and facing the fact that all of us, young or old, will eventually die. That's how she began her journey as an advocate and voice for people of all ages facing end-of-life issues. Deborah volunteers for a group called Compassion & Choices, which supports Death with Dignity, serving as president of the Sedona chapter for eight years. Deb has a blog online at letsdiscussdeath.blogspot.com where she has posted several articles on the subject of death and dying. One of Deb's most read articles is "It Won't Kill You to Talk About Death." Deb says, "After many years of advocacy and activism, we are finally seeing more and more people who have become willing to talk about death. One of my personal missions is to make sure people prepare their advance directives, putting their end-of-life wishes in writing, for example completing the '5 Wishes' document." Deb has lived in the Verde Valley for more than two decades and loves the area. About 22 years ago while living in Texas, she visited the Verde Valley and fell in love with Cottonwood. She says she knew instantly that Cottonwood would be her home forever! Deb is currently employed by Verde Valley Manor, an Independent Living Apartment complex for low-income seniors where she serves as resource coordinator. In addition, she also has her own business, WordCraft, where she a freelance writer specializing in business copywriting and public relations. Deb is no stranger to researching and writing news/feature articles on topics ranging from business to healthcare concerns. In her work she often does brochures and ads to raise awareness for clients and for worthy charitable causes. In the past she has worked in many areas in the Verde Valley including the Yavapai College as well the hospital when it was still named Marcus J. Lawrence Hospital. Deb told me that she plans on working for about another 10 years and then she plans to move into the Verde Valley Manor for her retirement. I asked Deb to describe what the beauty of death and dying means to her. Deb's response was, "At the bedside, I've witnessed many people accept that this life is over and literally surrender to the next life. I want to empower people to be independent and proactive about taking care of their end-of-life needs, which includes living every moment to the best of their ability." I was curious to know what would be the one thing she would like people to know about her, and her response was, "The Verde Valley is the Love of my Life." I lastly asked what her vision is for our community. The response was "...that death becomes dinner-table conversation. We plan for babies being born, weddings and anniversaries but we don't plan for death. We can't plan until we start talking about it." Please join me in congratulating Deborah Darby on her commitment to our seniors and helping our community to be more proactive about making end-of-life decisions, and for the many wonderful things she does in the Verde Valley! For more information regarding Deb's services, please contact her at wordcraft@q.com. Lik: http://verdenews.com/main.asp?Search=1&ArticleID=62984&SectionID=102&SubSectionID=163&S=1