I’m still here. Updates on wildfire smoke, a hospice patient in the family, and garden things.

Readers, forgive me for I have sinned.  It’s been two and a half weeks since my last blog post…which is a first.  Maybe it’s a sign that my life really has been just as busy as it feels but still, excuses are boring so I’ll just leave it at this:

Hello and I’m glad to be back.

Updates:

Mon Pere: I wrote a blog post about my father-in-law’s unique dance with aging a while back (see Elders and the Strange Gravitational Effect of Final Mystery) and since then his spiral has tightened.  He was admitted into hospice care a couple of weeks ago and, as so often happens, his symptoms have greatly improved since then.  Finally…relief.

It was interesting watching him work his way through all the many and powerful misunderstandings that still exist about hospice in the minds of most people.  He was very reluctant to take the step because, as he said, “I just don’t feel like I’m dying yet.”

And rightly so.  He’s not.  He’s still very much alive…and he will be until those final days or hours when his body begins it’s final, dramatic shut-down sequence.  Until then, he will not…I repeat NOT…be dying.  He’ll be living with a terminal illness which is not only a completely different thing from dying, it’s where hospice care really shines.

So far the hospice staff (along with family members) have managed to get his escalating pain…previously managed separately and inefficiently by three unrelated doctors in three different far-flung offices…back under control.  His medications have been consolidated, coordinated, and increased enough to actually do the job.  A nurse visits him regularly at home so he no longer has to make an appointment (then wait a week with out-of-control pain before having to drag himself down to whichever doctors’ office is involved.)

After months of debilitating pain he’s been able to finally return to his normal cheerfulness…to doing the kinds of things that he loves.  It’s a transformation we’re all profoundly grateful for.

The hospice he’s with also brought equipment and aid into the house that’s making things a lot easier for him…from getting out of bed, to going to the bathroom, to getting around the house and farther, to taking showers comfortably and safely.  He’s looked at me a couple of times in wide-eyed wonder and mentioned what a gift it is–that it’s all paid for through Medicare.

“It’s free,” he whispers, not quite believing that this help he’s needed so desperately–that’s allowed him to finally stop thinking grim and drastic thoughts and happily return to everything he still loves and longs for–is his for the asking.

I think it’s hard for all of us to believe right now, that there exists this one small part of our tortured healthcare system that’s actually delivering what we all want it to; relief and a better life.  And saving money to boot.

I just wish everyone understood that more.

The Wildfire Smoke:  It’s awful.  It’s like hell.  Brimstone shit.  I got up the other morning, looked out the front door, and this is what the sun looked like:

Seriously.  No photo shopping.  Everyone is a smoker these days.

Air quality has been in the dangerous zone for a couple of days here but it’s far worse up in the mountains near the fires.  On an air-quality scale from green to red, the town of Salmon, Idaho’s air is rated purple…beyond red.  The mayor just had surgical masks handed out to everyone in town and yet still…the fires are likely to rage until the snows come to put them out sometime in late fall.

Prayers for early snow in the Northwest this year are currently being solicited.  You can just send them up into the air where hopefully the jet stream will blow them into a smoke plume.

And last but not least…

The Garden: Harvesting mode.  Roughly forty jars of pickles canned so far (halfway through), twenty quarts of frozen green beans, a shitload of grated zucchini both frozen and dried, pickled peaches, sun dried tomatoes, a lot of blanched and frozen turnip greens, and dehydrated elderberries coming out our ears.  (Everyone is getting elderberry brandy for the holidays this year.  Good flu fighter.)  Oh yeah.  And winter squash.  Lots of winter squash.  And tomatoes, basil, corn, potatoes, peppers, beets, and eggplants waiting in the wings.

It’s been a good year in the backyard.  Gratitude all around.

copyright Dia Osborn 2012

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Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System

(Continued from Part VII: Advance Directives: Ours.)

Giants and Freia by Arthur Rackham

Turns out there’s a huge, third party squatting in the room with us, as we wade through our advance directives.  It’s our healthcare system.  We didn’t realize until now what a disproportionate influence it wields on our choices about dying and I’m struggling with some real sadness about it.

We discovered that the choices we’re making today are different than the ones we’d be making if we were either very wealthy or had access to universal health care.  

The unsettling truth is that we’re both opting to die a little earlier for reasons of cost and care burdens.  In our current healthcare system, dying could cost so much for medical intervention and help with day-to-day care, that it could easily leave whichever of us was left destitute and/or with broken health.  It’s happening every day to people just like us…middle class with decent insurance (I saw a couple of tragic examples when I worked with hospice)…and the hubster and I simply refuse to do that to one another.

I had a very hard moment the other night when I suddenly realized I wouldn’t mind so much, lying in bed for months or maybe even years, slowly declining while looking out the window at my beautiful garden, as long as I could still write and visit, study and learn, meditate and muse.  It surprised me.  I’d always thought if I couldn’t hike, escape to the mountains, garden and swim anymore, that I’d be done.  I had no idea that I could still be happy without those things…if only the burden of care was spread across the shoulders of enough people to protect them all and care for me well.  If only we were wealthy and could afford to hire them.  If only our healthcare system was universal…and actually helped with home care to begin with (which it doesn’t.)

For the first time I realized I’m not so much afraid of being disabled as I am of destroying the people I love with the burdens of my care, or of being cared for negligently in an institution somewhere (I saw too many tragic examples of this), and I experienced an unexpected and poignant wave of love and deep longing for my life.

On the one hand, I’m irrationally wishing we were born in Canada, or England, or Cuba instead…some country with universal healthcare that cares about all its people equally.

On the other hand, I say irrationally because I know that if I turned Fate loose for a do-over like that, we might just as easily have been born in Bangladesh or Somalia.  Some other country where dying can happen even faster.

I suppose there’s no useful purpose to be had in bemoaning destiny.  The hubster and I were born in this country, we’ve lived here all our lives, and this is where we’ll die.  And to tell you the truth, we don’t really want to die in another country with better healthcare anyway, even if dying here could come earlier and suck more.  We’ve loved our lives here.  This is our home and no country is perfect…a corrupted healthcare system just happens to be our particular Achilles heel.

So yes, all things considered, it’ll be okay if we wind up dying a little earlier here than we would if we were living in an ideal world.  I guess comparing our situation to perfection isn’t the best idea.

(Next the conclusion: Part IX: Out of Town And Back Again (With Advance Directives In Tow)

copyright Dia Osborn 2011

Elders and the Strange Gravitational Effect of Final Mystery

image by chrisroll

My elderly father-in-law (I’ll call him Mon Pere) is living in the light of two very different worlds right now.  In the first, he pursues everything he enjoys with great flair.  He goes out dancing with his ladylove, attends continuing education classes at the University, tells his same beloved, off-color jokes over and over again, and takes long, contemplative walks by the river every afternoon.  In the second, he lives with metastatic cancer.  Mon Pere is what’s known as a character, and he navigates both worlds with the same idiosyncratic grace.

His cancer is slow growing and if it weren’t for a preventive screening test some time ago, he wouldn’t have even known it was there until recently.  Because of his age at the time of discovery, and because the likeliest outcome of treatment would have been to erode his treasured quality of life, he declined anything aggressive and has instead lived pretty much the same life he lived before, only with the uncomfortable knowledge that a force he could neither see, feel, nor resist was relentlessly growing inside him.

This burden of helpless knowing strikes me as unnecessary and a little cruel but, as far as I can tell, Mon Pere has no regrets.  All our conversations eventually drift to the topic of how grateful he is for the life he’s led and the deep pleasure he now takes in his daily routines.  For all I know, without the useless knowledge of his cancer over the years, he might not be feeling this heightened sense of gratitude and pleasure.  Perhaps that’s what makes the added burden of fear he’s also had to live with worthwhile.

Mon Pere has been, all his life, every year, an avid traveler but that, too, is changing.  This morning he refused an invitation from the hubster to go on a fishing trip to Maine, emotionally disclosing that, these days, he longs more for the simple charms of home.  There’s a creeping pain to be dealt with and instinct is whispering it’s time to rein in the adventures.

I’m moved and fascinated by the unconscious courage he displays.  He’s unusual in that he’s always been willing to talk about his own death as well as the life he’s determined to live on the last leg of his journey there.  He’s been clear with us all that, for him, living fully is more important than living longer.  While he’s prepared to surrender to the naturally occurring indignities of dying, he’s determined to avoid any additional medically inspired ones, and so far he’s shown an uncanny instinct for sniffing out and avoiding most of the interventions that might extend-but-strip his life simultaneously.

I admit I’ve been tracking his choices closely over the years, and I’ve learned a lot from him. The truth is that, like him, we all dream of living fully until it’s time to die.  The problem is our healthcare system isn’t designed for that.  It’s not designed to allow dying at all.  It’s designed to keep everyone alive as long as medically possible and, while that’s a decided boon during the healthy years, its lopsided effort at the end is now churning up so much turbulence that a simple death has become a rare event indeed.  I’ve looked into the haunted eyes of too many surviving loved ones and seen the same regret there; They never wanted to die like that. 

Everyone agrees there’s a problem, and there are many good efforts afoot to change it, but in the meantime passing through the medical system during aging is a lot like swimming downriver into ever-increasing amounts of flotsam and jetsam.  There’s so much to get snagged on that it requires an almost impossible degree of knowledge and native cunning to navigate through it all unscathed.

But Mon Pere is doing surprisingly well.  He’s like an old trout, refusing to rise to the fluttering lures cast over him, sinking lower into the water instead.  He’s not susceptible to the whispered promise of extra time because, as he so often says, Been there, done that, bought the t-shirt.  He doesn’t have a bucket list left of things still to do because he already lived his whole life doing them.  What he craves now are the infinitely dear, small pleasures of life.  To walk and learn, laugh and dance, savoring the wonder of each new day.

This gradual slowing reminds me of the other elders I worked with and how they, too, started to bend and change under the weight of this approaching mystery.  It often seemed like they were nearing something I couldn’t see, something with an immense gravitational pull to it, as though the closer they circled in, the denser and heavier they became.

I used to think of death itself as a null and empty void…a dark nothingness, an absence-of…with physical life perched on one side and, hopefully, some kind of spiritual life on the other.  But that was before I spent time working around its edges, before I discovered the strange, luminous field this final Unknown generates.  Some have called it the light of dying, which I’ve also glimpsed, but at the very end, in those last hours before a person dies, it took on an additional dimension.  It felt like an immense current flowing through the home, as if some subtler kind of electromagnetic field was in motion.  I noticed everyone’s emotions, muscle contractions, and breath seemed to unconsciously synchronize with it, and my own response was the same each time.  My skin would tingle and hair rise, my heart would first fill with a vast ache and then suddenly contract and break in one sharp blow.  And out of the pain it would delicately unfold again like some kind of pulsing sea anemone, opening up its thousand waving tentacles to grope the passing current…for what, I still don’t know.

The experience was reassuring but disorienting, too. There were a few times after returning to my car when I had to just sit and grip the steering wheel for a while, dazed and bemused by how sharp and crystalline everything looked, as if I was gazing out through a long-smeared window that had finally been cleaned, before the strange afterglow would fade enough for me to drive safely away.

I don’t think of death as an empty void so much anymore.  I’m not sure what I think instead, I can’t make make sense out of something I’ve only glimpsed, but the thought of it makes me feel curious, calm but a little nervous, and breathless.

Mon Pere is hardly dying yet, he may not for years, but he’s slowing.  Turning.  Caught in the outermost edges of that pull now and commencing its widest spiral.  He’s a little sad sometimes, a little scared, but mostly he’s head over heels in love with his life, as he should be.  As we all should be.

This is the most amazing ride.

copyright Dia Osborn 2011