Cartouche's Blog

Writing My Way Out of Something


Someplace, somewhere else, USA
February 09
Mind My Own Business


JANUARY 19, 2011 11:43AM

Window Shopping for Death

Rate: 58 Flag

It starts with almost invisible deterioration.  The hearing is slightly compromised.  There’s tentativeness about anything from negotiating a staircase, corncob or a checkbook to remembering what day of the week or time it is.  There’s a shuffle to the step.  The one or two items that were occasionally misplaced, suddenly join a growing pile of jumbled objects, names, dates and places. They have all gone missing, never to be found again.  They are lost forever. 

Eventually, like ourselves, they will all be forgotten.

Every day becomes a mountain, a hurdle, starting at a perpetual point A from which there is no logical point B to aim for or follow.  There is no map for aging.  It’s rarely as graceful as we hope.  The tidal wave of maladies and forgetfulness that can no longer be excused or justified looms larger, threatening to swallow what’s left of the person and drown everyone else around them.  

Slow.  No wake.

The last will written on what may as well have been parchment paper, there is a test of it daily.  The strongest of it cruelly eludes the caregiver. There’s not enough to go around.  Somehow, the person who is crawling backward toward childhood and infancy, retreating into a shell of the former self, curled into a ball of twisted thought-twine continues without direction, helplessly aware of impending darkness yet staunchly determined to avoid welcoming what little light remains. We grasp at straws from where everything that once was, empties out on either side.

This is what Alzheimer’s looks like from the outside in.

The witnesses of this cruel and unusual fate attempt to juggle the everyday demands of life with the quicksand that is taking the very soul you are trying your best to save.  It threatens to seep into what life you have left and to take your own with it. Both exist in a parallel universe that has little basis in reality.  The process of dabbling between life and death is slow and painful.  It’s killing us all.

We are disconnecting the dots.

In Florida, in particular, I see the process of dying as it plays out in slow motion.  In reverse, at the end, we have tens of thousands of elderly people in various stages of decrepitude whose calendars are filled with all the doctor’s appointments, ailments and prescriptions that their insurance will cover and surely more that Medicare will not.

Please take a number.  Yours is not up.  Yet.

I see them in restaurants, barely capable of lifting their heads, sitting in chairs with eyes glazed over, disengaged, staring into the distance of an unknown nothingness waiting for nothing to happen fast.  It passes too slowly.  I observe them in degrees of confusion and disrepair, in waiting rooms, in hospital beds, in transit from here to there, waiting for a bus that doesn’t come.

I’ve heard the moaning and the keening and the waling beyond the walls that divide and keep them separated from here and there.  I write the unformed words that echo in my head.  I see the age spots and spotted clothing, and curled knuckles and anguished faces.  Often, those wrinkled, gaunt visages belong to the caregivers. Amidst the flowers in vases, I smell the beginning of the very long journey to the end.

In the inequity of life, I hear stories of others who are wearing these shoes, worn to the soles and see with my own eyes how hard we resist and often refuse to succumb to the marching orders where life promises to take us to the other side of something else unknown.  And I wonder why it takes so long to accept that eventually, we will all go there.

We are window-shopping for death.

Elderly Hands 

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"disconnecting the dots".....That is a wonderfully appropriate description and exactly how I feel of late.
If Jon Blumenthal will forgive me, this is an awesome piece of writing. Evocative. Frightening.
I remember my grandmother no longer being able to remember. Some days I am writing something so simple and I cannot remember.
I could not remember a good friend's last name yesterday.
Then I remember that if you cannot recall what a key is called it is one thing but not to know what a key is then that is another thing.

I turn 60 this year. My assets that I once had are signed over to my sons. I watch wrinkles appear on my hands and wonder how I got here. BUT, the fact that I am the last one standing in my family gives me hope. Death shopped me twice, maybe three times. I refuse to take it's credit card.

rated with hugs
My heart just fell and thumped...
great writing, patricia. and we know, you and i, how terribly familiar what you describe is, that those aren't fantasies, those memories that graze our arms. it's easy for me to say i accept that death is out there for me; i only hope i have enough of a mind left to hurry it along if i can.
The single-lines interspersed throughout give this important piece validity and pause. The last line is haunting. My grandmother had Alzheimer's. But sometimes it is the living, not the victims, who want them to remain alive for as long as possible . . . because it is the living who remember . . .
As an aging caregiver, your words really hit home. I watched my Dad slip away slowly, now I am caring for Mom. She is still there mentally, but as I watch her decline physically. I can't help but realize that will be me in the near future.
You are so observant, Cartouche...insightful and moving. I am not afraid...I don't know why...I think I will live to be a hundred for some reason...xox
We will all go there--Florida is the place to remind ourselves. Beautifully said.
A reminder to live well while we can, if we can.

You have to have the ability to get inside someone's heart as well as their mind to understand all the losses and residual emotion of this disease. You do, and you write with empathy and skill.

I, too, liked the "disconnecting of dots" metaphor because it tells the whole story.

Well done.
You captured this exceedingly well. I keep reminding myself not to be so damned shocked when someone dies.
This song of yours delivers on the dignity. "Waiting for nothing fast." That's crystal perfect.
I saw them too...just now.
"Disconnecting the dots", yes. Patricia, this was a gorgeous, insightful (yes, sad) piece of work.
I admire your writing and your caregiving, but I agree with John. You need to move. Or not.

I have to go out soon to BC to its equivalent of Florida, Victoria, to put my mother into a nursing home, partly due to some form of dementia. The whole thing is hideous and crazymaking and terrifying and expensive and shitty. Nice that you can make it poetic.
Powerfully written cartouche. If Alzheimers ever befalls me, I'd prefer to take some pill that will fast-forward me to the end.
Each year as the population grows older, the numbers increase. Basic economic theory is being played out. With the growing numbers, more money and research is dedicated to Alzheimer's and dementia. A king's ransom waits for someone with a cure. The rest of us wait.
Nicely said. I watched my dad on the memory slope until he was too embarrassed to say a word as I pushed his wheelchair around the nursing home grounds.
A piece which rings all to true to my heart. Maddening, disturbing, life affirming, life failing, all trapped within these words you have shared.
Disconnecting the dots. I've never heard it described more aptly. Somehow, you manage to write so gracefully about an indescribably awful condition. I saw what it did to my grandfather; I don't know why greater strides aren't being made to find a cure or more effective drugs to halt the progress.
How well you capture the banditry of Alzheimer's, that drift of the self from itself, from that core existence that gives a life its coherence, that sense of "the river losing its name in an ocean," as a line from Billy Collins has it. We are "wearing these shoes, worn to the soles," and it wears our souls. A stunning post, scrupulous, unsettling, chilly, dark.
I see this every day of my life..... ::sigh::
like others have mentioned before me "disconnecting the dots." is a perfect description of Alzheimer's. I would love to see a published version of this piece with that title. (preferably in a nursing journal, but I'm not sure they'd go for it- it would be appropriate though, even if not traditional)
Watching mom lose her smile, her laugh, herself, I understand this. Add in that sometimes at 57 I have lately been a space cadet, I try blaming stress or the meds for pain to keep me working but somewhere in the back of my mind I hear myself asking now, this time, now....
Oh the post is so damn good and perceptive and can fill one with dread in a heartbeat. Having a mother who suffered from this disease, I appreciate so much about this. It is a horrific disease, I hate it, despise it and there's not one good thing I can say about it or the difficult process of aging that affect most people. It just ain't right. I took heart in watching Betty White last night on the David Letterman show. She's turning 89 this week and her mind is sharper than most my age, hell my children's ages. Fantastic post cartouche, even though it makes me feel so sad once again.
I am a caregiver and this is exactly how it is. You did an AWESOME (sorry John) job of describing this. I used to live in Florida and I remember seeing SO many people traveling in public beyond their capabilities. And so many with no families. Baby boomers begin to turn 65 this year. Who will care for all of us? RR
Just when I had convinced myself I would never die you come along with this. You make denial difficult.
So beautiful, bleak, and frightening. The loveliness of your writing was a sort of consolation for the terrible meaning behind it.
I don't like this at all. Not at all. Because I sense that it's true, very eloquently true, and I'm not ready.
Close to the bone, and getting closer.
Such strong writing of sorrow and angst. Indeed death does come for us all.
a rock in my gut...
My grandmother died from Alzheimers. Like you I turned 50 this year.

And what I've always told those puzzled by old age and its challenges or those contemplating suicide: We all go quickly enough. Why rush things? The day we were born it was written the day we would die. It is all supposed to play out for a reason. As Caroline Myss puts it: we are not supposed to understand life's mysteries. Life is mysterious. Old age has always been part of the eternal plan for reasons unknown.
Really well done with a very real excellent point of view piece...
Of course, "disconnecting the dots" is what will stay with me always. Cartouche, your writing...~r
I knew this story intimately with my Mum. Saw those faces and probably worn them some days too. The hearing though, I understand, is the (usually) the last to go. Even though they can't understand, we must choose our words carefully even if - like you did here - right up until the end.
Although vegetarian myself, my dad, who ate dead animals, died of Alzheimers. Alzheimers, as you may know, is believed by many to be Mad Cow Disease in humans. Correctly called Creutzfeldt-Jakob Disease or CJD, it is a form of "transmissible spongiform encephalopathy". Of course, when profit is the only motive, as it is in the great USA, not human health nor the well being of children nor the health of the planet, the truth is very hard to find if it interferes with profit....
Less than a week ago, I was stroking my mother's head as she rested it in the crook of my neck, whimpering and falling asleep. For an hour and a half, I'd fed her soft food, spoonful by spoonful. Fifty five years ago, she did the same for me. This feels sad, but also natural, and I am fortunate to be able to share my mother's dying so intimately with her. As always, she is showing me how to do this one last thing.
This is incredibly powerful and moving. I like to think that it is possible for the last legs of our journeys to be happy and serene. But maybe I'm naive. I may think differently in 20 years. Rated.
I'm only 85 so I'm just getting the bitter flavor of the edge of death. I have been anticipating this for about 81 years and wondered why the world was not in constant panic over the death sentence passed at birth. It took me a while to realize that the world is in constant panic but hides it under all sorts of nonsense. I am beginning to wonder what century this is. The world seems to be in the Middle ages.
Simply extraordinary. Haunting, evocative, painful and so true. You know I know. I know you know. I've tried, but you've told the story so much better. I am humbled. I hurt for them and for us.
I still can't get over the fact that our "reward" for living a long time is old age and all the indignities and losses it entails. This piece is sad and disturbing. You are a brave woman to be living and working in this bleak landscape, Cartouche, and I admire you for writing about it so honestly and poetically.
Well-wrought as ever, and deeply moving, particularly so since I am also window shopping death -- and the mannequins in the windows are very much as you describe. Death with dignity is at the top of the shopping list, but the stores are all too often out of that merchandise.
This is very, very fine, cartouche. I feel what you intended us to feel. And prefer not to define it. Or dwell long upon it. (kiss)
I read this yesterday and didn't feel that I could comment. It hit too close to the bone. Still does, but I wanted to say well done.
um, why didn't this get an EP? ah, I can never de-mystify the mystery. and they won't let me rate it twice.
An older gentleman respected greatly in my community was buried last week. He had drifted away slowly, a victim of Alzheimers the last few years. The rabbi said something I thought was wonderful:
"Sometimes death is the moment we finally stop dying."
I appreciate that your words can convey what it feels like as well as what it looks like. But I appreciate Deborah Young's and greenhorn's teachings on this. Please God, let me see like them and be like them for my own mother. Let me be around people like them when my time comes.
And I've got to say, Soap Box Amy, I've known a few great Alzheuner's researchers, and I haven't heard a one of them subscribe to the Meat Eating Mad Cow disease or conspiracy theory (due to a lack of a cure) positions.

If only it were so easy.
This is a beautifully written piece about a compelling problem. If you believe, as I do, that end-of-life autonomy is essential to personal liberty, then pushing all states to adopt death with dignity laws along the lines of Oregon's is an obvious step. But Alzheimer's sufferers, almost by definition, still won't benefit, because by the time they have six or fewer months to live, they aren't going to be clearheaded enough to meet the tests for getting assistance. So it's back to the drawing board on finding a legal fix for them that's also ethically acceptable.

In the context of ALS rather than Alzheimer's the new novel WHAT YOU WISH FOR explores all that ground with compassion and accuracy, so your readers may want to look for it on Amazon.