Dying Well

If you give yourself, you won’t be forgotten: a reflection on Alzheimer’s disease

Alois Alzheimer's patient Auguste Deter in 1902. Hers was the first described case of what became known as Alzheimer's disease. "Auguste D aus Marktbreit" by Unknown - Unknown. Licensed under Public Domain via Wikimedia

Alois Alzheimer’s patient Auguste Deter in 1902. Hers was the first described case of what became known as Alzheimer’s disease.
“Auguste D aus Marktbreit” by Unknown – Unknown. Licensed under Public Domain via Wikimedia

The Promethium advances of medical science

Watch from the sidelines as deteriorating minds

Are rendered to a nascent infancy where



And person

Fade backwards into nothing.


If you give something away you don’t lose it.


“Nothing can be done” your doctor sheepishly admits

“Your time is slowly fading”

Your questions like,

How long?

When will I lose my license?

Will I be violent? What will I become?

Are met with a simple, “I don’t know.”

The anticipatory grief begins.


If you give something away you can’t lose it.


Time is now a precious commodity

Time is now your worst enemy

Time will fade you

Time will take your memories

Now and only now is your best time

Now is the time to get the house in order


When you give your memories away you can’t lose them


Active management for such a passive disease

Write it down

Record it.

Share “that one time . . .”

Use that time to give, give and give.

Give yourself away.  Quickly.

Time is running out.

Because . . .


If you give yourself, you won’t be forgotten


A Revolutionary Plan for End-of-Life Care

Here’s a guest post and promotional from Dr. Angelo E. Volandes:

There is an unspoken dark side of American medicine-keeping patients alive at any price. Two thirds of Americans die in healthcare institutions tethered to machines and tubes at bankrupting costs, even though research shows that most prefer to die at home in comfort, surrounded by loved ones.

Dr. Angelo E. Volandes believes that a life well lived deserved a good ending. In The Conversation: A Revolutionary Plan for End-of-Life Care, he shares  the stories of seven patients and seven very different end-of-life experiences.  These stories demonstrate that what people with a serious illness, who are approaching the end of their lives, need most is not new technologies but one simple thing: The Conversation. He argues for a radical re-envisioning of the patient-doctor relationship and offers ways for patients and their families to talk about this difficult issue to ensure that patients will be at the center and in charge of their medical care.

It might be the most important conversation you ever have.

Here’s a video that captures its message.

“Death From Cancer is the Best”

Dr. Richard Smith, a former editor of the British Medical Journal, wrote recently, “death from cancer is the best.”  And I think many of us, if not most of us, would disagree — to one extend or another — with Dr. Smith.      

Cancer can create an embarrassment of dependence for it’s dying victim, causing the possibilities of:

Uncontrolled bowel movements,

Intense fatigue

Wasting away (cachexia)


And, of course, there’s the equally horrible side effects of chemotherapy and various other cancer treatments:

Nausea and vomiting

Hair loss

And more pain.

So, what in the hell is Dr. Richard Smith talking about?  Has he considered how many small caskets cancer has filled?  The emotional stress, the exorbitant amount of money spent and the powerless insurance fights?  How can an end-of-life that involves so much pain, money, dependence and cachexia be considered a “good death”?

He writes, with a bit of pithiness, about the good death of cancer:

“You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion,” he says.

“This is, I recognize, a romantic view of dying, but it is achievable with love, morphine, and whisky. But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.” — Via the BMJ Blog

There’s over 100 different types of cancer and not all cancers are equal; some are are much more deadly and others more painful.  And I hope that Dr. Smith’s statement isn’t a blanket, meant to cover all types and forms. If he is making a blanket statement, he’s wrong.

Yet, I think the other metanarratives of “cancer sucks” and “cancer is the enemy” are equally wrong.

Luis Buñuel writes:

“An even more horrible death is one that’s kept at bay by the miracles of modern medicine, a death that never ends. In the name of Hippocrates, doctors have invented the most exquisite form of torture ever known to man: survival.”

We all know that the word “euthanasia” means “a good death”.  The antonym of “euthanasia” is “dysthanasia” which means — you guessed it — “a bad death.”  On a more practical level, “dysthanasia” is “generally used when a person is seen to be kept alive artificially in a condition where, otherwise, they cannot survive.”  The bad death is a modern, medical induced phenomena where every attempt is made to hold back the inevitable; and yet, as Luis Buneul states, it ends up being an “exquisite form of torture.”

Part of the reason that cancer is often seen as bad death is because of the medical community’s attempt to use nearly every means possible to “cure”.  Even when the prognosis is terminal, there seems to this held out hope in the miracle of modern medicine.  And so, it’s not necessarily the cancer that is “dysthanasia”, but the treatment of it.

It also seems that our hatred towards cancer death is caused by framing cancer in a war narrative, where cancer is seen as “the enemy.”  There are some problems when we frame cancer using a war narrative.

In earlier research, investigators found that war metaphors can lead to feelings of guilt and failure in patients who die of cancer, even though they have little control managing it.

Hauser says that medical professionals and media outlets should try to help expand the way that people think about the disease. He cites the “watchful waiting,” a passive method of treating prostate cancer, as one such example.

“What would be more beneficial would be changing the sorts of stories about cancer out there to expose aspects of the disease that don’t fit with this enemy conceptualization,” he says.  “Blame is being put on the patient, and there’s almost a sense that, if you are dying, you must have given up and not have fought hard enough,” said the study’s author, Lancaster University professor Elena Semino, in a statement  Via TIME

Sometimes — not all the time — cancer IS the good death.  To start out with the assumption that cancer IS the enemy may rob us from enjoying the final days of our lives.  Sure, there are times when cancer is a horrible death and times when it is the enemy, but not always.  Cancer is what it is … it’s one way out of thousands that might pave your path to the inevitable.  You will die.  I will die.  We will all die.  And it’s very possible that cancer is a gracious way to end.

While we should hate the fact that cancer causes death (yes, cancer sucks), in terms of comparison and contrast, it’s not the absolute worst way to reach the inevitable.  And while it mostly sucks, sometimes it might be the best possible option.


Why I Became a Mourning Doula

Today’s guest post is written by Laura Saba:

I’ve been around death A LOT.   When I was 4 one of my playmates, a 5 y/o, died of an asthma attack.   They buried her and planted a tree at school in her memory.  I couldn’t wrap my little brain around it – where did she go, and why did they plant a tree?  Was she inside that tree?

A few years later, my grandmother’s tenant died, her body there on the apartment floor.   Then when I was 11, my friend and I were about to deliver our newspaper route, when her mom was discovered.  She’d had a stroke while leaning over to pull cookies out of the oven.  Her face lying on the hot open oven door ’til found was not a pretty scene.

Flash forward to high school and you have the requisite schoolmate suicides, overdoses and car crashes.   A few more years spin by and my best friend is murdered in a ”wrong place wrong time” incident, then a few years later my brother was KIA in Iraq (Semper Fi!).  Then friends lost to cancer, as well as aging relatives and friends lost along the way.

My work as a birth doula also brought me into the realm of death at times.  Soon I was volunteering as a loss doula, for women who would be induced due to a lost baby.  There were the stillbirths.  Then volunteering with Hospice, as I got really good at working with grief.   Along the way I also co-owned a “Grief Gift Basket” business, where we created condolence baskets and our highly popular “Miscarriage Gift Baskets” which addressed the unspoken grief of so many women in a more honest and open way.

Along the way I often stepped in, helping others plan, assisting them as they went to make arrangements.  Suddenly I knew the ins and outs of an industry I’d never been in.  Too, I saw that supporting people through this process was, in so many ways, calling upon the skill-set of the birth doula, just channeled into a different high-stress time.

It became quickly obvious that people needed an advocate when dealing with this emotionally charged situation.  That they needed a 3rd party, not emotionally attached to them or their dearly departed, to advocate for them, to hold their hand, to make necessary phone calls, to run clothing to the funeral home, or help figure out where that green cemetery plot is, precisely.   Someone to help them hold it together as they navigate the minutiae in this complicated time – and to ensure they are fully informed, while ensuring they are also physically and emotionally supportive.

It amazed me to see that people responded to this support even more quickly and readily than they initially did to birth doula support.   How was it that this Mourning Doula did not exist prior?

I realized it is because in other times we took care of our own dead.  Family, friends, our villages rose up and assisted us. As with the birth industry, we need the support because these emotionally sensitive circumstances are no longer handled in the same way, but rather are almost under-the-rug-swept, as we as a culture work to dissociate ourselves from the messy realities of birth and death.   Subsequently, there is the potential for someone to take advantage of our vulnerability – not even necessarily out of ill will or greed (though it too often is), but even out of good intentions.

It is simply a fact that no one knows what we would genuinely want if they don’t know us, and aren’t putting advocating for us first and foremost in their mind – especially when there is financial gain involved, it can be all too tempting to sway one in a particular direction over another.   Had our culture not distanced itself emotionally and physically from birth and death, if these undertakings had remained undertakings rather than becoming a business, things would perhaps be very different at this time in history.   However, as things are, this is how life is in the modern world.  We have turned the very bookends that mark our lives into an industry, giving power over some of our most precious moments to others.  With power comes at times corruption, and so it is we see the rise of the doula.


Laura Saba is founder of Momdoulary, LLC, which provides training and certification in the Momdoulary Method of both Birth and End-of-life, Mourning, and Death Doula and Midwifery support, and Post-Loss Life Coaching, and Professional Organizing & Management of Material Artifacts Post-Loss.

Laura’s background in life & loss coaching, doula support, FEMA and Red Cross trainings, and experience providing support following natural and terror disasters, coupled with hospice volunteer support, led to a natural combination of her doula and coaching experience to provide end-of-life and post-loss support. This inclination was reinforced by extensive personal experience with loss, beginning at the age of 4 with the death of a playmate, and extending to the loss of a brother in Iraq, and numerous friends and former colleagues on 9/11.

If you’re interested in being trained to be a End-of-Life doula, Mourning doula, Death doula and/or Death Midwife, you can visit Laura’s website, Mourning Doula.  

The Guardians of Death: A Short Story

Lyle celebrated her twelfth birthday nearly a year after the end of The War.  It was a long, oppressive war that left the world impoverished, broken and depressed.  Like many children her age, Lyle’s father had died in The War, leaving Lyle, her mother and her grandfather together in their two room apartment.

Lyle’s family situation wasn’t unique, but she considered herself lucky. She didn’t have any memory of her father, any grief that plagued her soul during the bitter cold nights of winter.  She was an infant when he died and all she had were photos of him in his Army uniform, holding her tight like he knew what his future held.

All the fatherly things that fathers do for their little girls had been assumed by her grandfather. Her mother worked when she could find it, and her grandfather stayed at home in their small apartment; he cooked (his potato casserole was Lyle’s favorite), did the cleaning when he felt able and tended to Lyle like a daughter, tucking her in bed and telling her bedtime stories when work keep Lyle’s mother late. They shared giggles, lots of hugs and both loved stargazing, especially in the winter months when the air was clear and the stars seemed brighter.   “It’s in the darkness, “ her grandfather would say, “that you can see the stars.  And it’s in the winter night that our eyes can see them most clearly.”

Lyle knew her grandfather was getting old. His cane became more of an aid with each passing day. And she know – from the stories told to her by her friends — that one day the Guardians would come unannounced and take grandfather away. The Guardians, she was told, were a group of people commissioned by society to shield us from the pain of dying and death. The War, they said, caused too much heart-ache and the state of the world was too depressed to confront the realities of death. “It’s just better”, Lyle was told, “that the Guardians deal with it. They’re professional. It’s their job.”

Lyle dreaded the day her grandfather would leave. And the older she became the more she feared it. Like a specter that grew longer with the setting sun, so her dread of grandfather’s death grew each passing day.

And then it happened. She came back from school and … gone.

Tears streaming down her face, she begged her mother,

“Where is he? Why can’t I see him? Is he dead? Is he in pain?”

The questions flowed as profusely as the tears.

And Lyle’s mother did the best she could …

“He’s very close to death … probably a couple hours … he’s with the Guardians at their home … they’ll take care of him …. that their job.”

Lyle ran to the bedroom. The answers didn’t satisfy. She slammed the door shut and devised a plan. As soon as the apartment had become quiet, Lyle jumped out of bed, grabbed her winter coat and tiptoed out the back door.  The stars provided enough light for her to make her way to the Guardians’ home.

In and out of the back door came the Guardians, carrying dying bodies in and going out with the dead ones.  Dressed in their black clothes, they moved effortlessly, methodically and solemnly.  It didn’t take long for Lyle to find an opening in the rhythm to enter.  She slipped inside and slowly made her way down the darkly lit hallways, peaking into the various crowded rooms, looking for her beloved grandfather.  A lone, decrepit figure strode up and down the hallway, keeping watch over the hundreds of those dying and those already dead.

In the corner of a tightly packed large room she found him.  His chest rising and falling at a slow pace.  Eyes closed.  Unresponsive.  She grabbed his hand.  And whether by miracle or reflex, he grabbed back.  A grip that was at first tight, but as the night continued, slowly lost it’s strength.

She awoke in a daze, not knowing how long she had fallen asleep.  Perhaps an hour or more.  Lyle was so used to falling asleep next to her grandfather, that she must have crawled into his small cot at some point in the night.  His body was cold.  His lips a blueish gray.  His face a ghostly white.  He was dead.

Wiggling out of the cot and onto the floor, she knelt down beside him and — like he had done for her so many times — ran her fingers through the strands of silver that graced his familiar head.  She began to cry, but these weren’t the empty tears of hopelessness and confusion she had cried a couple hours earlier.  These were tears full of memory, of love; tears of grief.

Within seconds, the figure of that old, decrepit Guardian stood at the doorway.  His keen eyes identified the source of the crying and he barked:

“Don’t you understand how dangerous this is?! Don’t you understand that once you touch death” he took a deep angry breath, “it will never, ever leave you?”

In as much defiance as a twelve year old could muster, she leaned over and kissed her grandfather’s cold face.  Tears dripped from her nose.

And then words welled up from Lyle’s deep and out of her mouth:

“This is my grandfather.  And this was my final act of love!”  

The words came with such power from such a small person that the Guardian was momentarily shocked.  The room Lyle was in was dark and the dim light from the hall outlined the Guardians frame, obscuring his face from her sight.  He stood taller, gathered himself, puffed out his chest and replied,

“We are the Guardians.  This is OUR job because you cannot and should not do it on your own.”

Lyle quickly retorted in a simplistic but honest statement, “I can do what my heart tells me I can I do.”

The Guardian stammered, “Leave now.  You are not meant to see this.  You are not meant to be here.”

She trotted out of the room, past the Guardian and quickly proceeded out the back door as the Guardian shouted, “You had better wash your face and your hands … !!!”

Lyle walked back home.  It was still dark, but the stars seemed brighter than ever.

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