Buoyancy, A Curious Japanese Ritual, and Admitting Confusion

IMDb

Today I hurt.  In pursuit of my timid triathlon quest I lifted weights yesterday, so today it’s harder to lift anything else.  And once I finished the round of weights, I went down to the pool to swim laps for the first time in over a decade and made an awkward discovery.  Most people probably already know this but it turns out fat is really buoyant.  I mean really. There are about sixty pounds or so standing in between me and my old fighting weight and, gauging from the way my body responded to the water yesterday, I think most of it is in my butt.  I may as well have had a life-preserver strapped to it.  Or an inflatable boat.  No matter how deep I dove or how hard I kicked to stay down there, my rear-end inevitably led back up to the surface like a drowning person seeking air.  It was embarrassing.  The self-delusion I’ve clung to over the years took a critical (necessary?) hit and now I’m forced to admit there is nothing, nothing, sleek left about my body.

The poor dear.  I owe her big time.

And now on to what I really wanted to talk about in this post.  There was a powerful insight I had while watching the Japanese  film “Departures” a couple of weeks ago but the problem is, I’m still not exactly sure what it was.  (Actually, I feel kind of like a quote I found once in a whole oats forum: The answers we found only served to raise a whole new set of questions.  We’re as confused as ever, but we believe we’re now confused on a higher level and about more important things.) Please bear with me here while I struggle to explain this.  For starters, there are a few things I do know about the insight.  For instance, it was a big one.  It felt like it might explain a lot of what I’ve been trying to communicate about dying in this blog.  It’s also continued to eat at me because I suspect understanding this one insight could go a long way toward easing the excess terror a lot of people feel about dying these days.

But what is it exactly?  Well, to explain that I need to describe three of the scenes that triggered the insight.  But Spoiler Alert:  If you haven’t seen the movie yet, these scenes will give a major part of the plot away.

Ready to go ahead anyway?  Okay.  Here we go.

The first is a scene where the main character, Daigo (who’s taken employment as someone who reverently prepares the bodies of the dead for cremation) meets an old childhood friend on the street.  The friend has his family with him and Daigo stops to greet them.  But the friend gruffly sends his wife and child on up the street without introducing them, telling Daigo that he knows he’s working with the dead and therefore wants nothing to do with him.  He ends the encounter saying something like  “get yourself a decent job” before walking away.

The second scene involves the death of this old friend’s elderly mother.  Daigo is asked to perform the “encoffining” ceremony for her; an exquisite, formalized, Japanese ritual of bathing and dressing the deceased in front of the watching family.  By the time this scene arrives in the movie, we’ve already witnessed the profound and often healing influence this ceremony has on the families, so we’re expectant that something similar is about to happen to Daigo’s friend.

And we’re not disappointed.  True to form, as he watches Daigo not only restore the dignity to his mother’s body that death stripped from it, but also elevate it to an almost transcendent state of beauty, the friend’s perception of  Daigo’s work transforms.  We all watch as the childhood friend finally “gets it.”  He’s moved.  He weeps, and he thanks Daigo for the gift he’s given his whole family.

Then, in the third scene, Daigo visits the recently deceased body of the father who abandoned him in early childhood.  He stands in a strange room gazing down at a body he doesn’t recognize and with which, other than anger, he feels no emotional ties.  Suddenly, two men hurry into the room hauling a cheap coffin.  They set it down, seize the shoulders and feet of the body, and start to heave it into the box.

We’re all shocked.  This time there is no beautiful, reverent ceremony.   No respect for the family standing in observance.  No restoration of dignity to the body or anything else for that matter.  Quite the opposite.  The actions of the two men only deepen the natural horror that always goes with the violent severance of life.  They treat the body as a “thing.”  As so much trash or waste to be collected, dumped, and burned.  Far from providing healing, this callousness threatens to increase Daigo’s trauma.

Needless to say he’s outraged and this heat transforms his wound.  He stops the men mid-transfer, and drives them away.  Then he kneels down beside the body to perform the ceremony of encoffining, and in so doing finally finds the healing for himself that he’s provided for so many other families.

These scenes were aching, beautiful, and real for me.  I recognized the peculiar transformation of healing that can come through deep pain, because I often saw the same thing in my work with hospice.

And…suddenly…I’m realizing I’ve misunderstood what the source of that healing really is.  All this time, I’ve thought it was caused by the power of the dying process itself, but it’s not.  It’s more than that.

Dying generates an enormous, surging wave of energy that sweeps through the lives of everyone involved.  It’s like a tsunami of upheaval, destruction, and change; physically, mentally, emotionally, spiritually, and socially.  The sheer magnitude of the energy involved inevitably wrenches and devastates to some degree, even with a relatively benign death.  The natural, physical violence involved as a body dies dictates that.  Dying as an energy is a lot like nuclear power or the roiling energy of the sun.  It’s an elemental force of nature.

I’ve mistakenly assumed that the positive transformations portrayed in the movie, the kind I often saw in my hospice work, were built into the dying process itself.  But now I’m thinking not so much.  The energy of dying is neutral.  It doesn’t care how we feel about it.  It doesn’t care whether it traumatizes us or not.  It doesn’t care if we face it with courage and respect, or run away from it horrified and screaming.  Healing us is not its job, anymore than it’s the sun’s job to make sure our houses are warm.  The power dying generates has the potential to heal, of course, but it probably won’t unless we learn how to harness  and direct it.

In Departures, Daigo shows us one way to harness it; with respect, willingness, humility, compassion, and tremendous courage.

The movie puts a concrete face on the beauty, dignity, grace, and healing that can accompany dying and death, something that I’ve been trying to describe in this blog for a while.  (With questionable success.)   And the movie does so without romanticizing or hiding the gruesome, gritty realities that are also involved.  There are a couple of graphic scenes (skillfully deployed with humor) which add something critically important.  The truth is that dying and death are primarily energies of destruction.  Yes, they’re still crucial to the world if there’s going to be enough room and resources left for all the new life yet to come, but that fact doesn’t tend to make the graphic nature of it all easier.  It’s important to learn the tools we can use to manage the graphic elements involved, things like humor, reverence, and building a bigger context.

There’s a deep paradox embedded in our nation’s perspective about dying.  On the one hand, our national eyes look at it through a scientific medical paradigm through which we’ve increasingly grown to see dying as a failure and a waste.  Now, I don’t in any way mean to dismiss the profound gifts that medical advances have brought to our lives or suggest that we should ever return to a world without them.  However, it’s important to understand that the lens of technology we’ve adopted has created a growing distortion in our expectations about death.  In attempting to reduce it from a universal force of nature to the level of a technological glitch, we’ve objectified dying in much the same way that the two men in the third scene objectified the body of Daigo’s father.  These days, in both medical research and public awareness, we increasingly see death as a mess and a waste, and we tend to treat it with a corresponding aggressiveness, disrespect, and callousness as we attempt to conquer and eliminate it.

But something else entirely is taking place on the individual level.  While our societal consciousness reels in a kind of perpetual horror of dying, I’ve met so many individuals whose lives have been touched in a beautiful, dignified way by the death of someone they loved, usually because of the help and guidance they received from a hospice or other agency that (in direct opposition to the scientific medical view) perceived dying as an incredibly valuable time of life.  These people I met had been through hell, no question.  But they’d also learned how to see what was happening through eyes of respect.  During their difficult journeys they were allowed and encouraged to unleash the fullest extent of their love, even in the face of unalterable and permanent separation.  To varying degrees, they had each tasted what it was like to rage, to long, to grieve, to laugh, to tremble, to hope, to ache, to collapse, and then to survive and come through a deep, irreparable loss within a circle of respect and safety, holding the hands of others who didn’t minimize, dismiss, or pull back from their experience.

This paradox between a technological perspective and a reverent one is, on a deep level, tearing us apart.  Our scientific determination to conquer death is engaged in a ferocious battle with our deep human desire to die a peaceful one and, even though we know deep down that we can’t have both, we still throw all our considerable resources at the first goal, and then bitterly fight over what policies to set that can guarantee the second.

It’s made us a little schizophrenic.

I don’t pretend to know what the solution to the conflict will be.  That’s something that only time, growth, and group wisdom can reveal.

But I do know what’s helping me climb out of the clash.  In a lot of ways I felt like my job with hospice was similar to Daigo’s, only I did mine with the living.  I bathed and dressed and prepared them, too, with as much reverence and respect as I could muster, and I did my best, minute by minute, hour by hour, and day by day, to restore the people who were dying and the people who loved them to a sense of their own dignity, courage, and strength.   I know it was something I never would have learned how to do without the help of my mentors…the experienced hospice staff who taught me…and I also know that I really want to figure out some way to pass their gift to me downstream.

Which is why I recommend this movie so highly.  Because I think it can help.  If you ever get a chance, give it a look.  Departures.

copyright 2011 Dia Osborn

The Film: Departures

I finally watched the Japanese film Departures last night and was astonished and blown away, both.  The 2009 Oscar winner for Best Foreign Language Film also captured thirty-four other international film awards and, in my humble opinion, deservedly so.  It took the difficult subject of “encoffining”, the ceremonial (and totally fascinating) bathing and dressing of the recently deceased which is performed in front of the family, and treated it with a lightness of touch and reverence that made it both moving and accessible.  Add in a stunning soundtrack and cinematography and no wonder it was such a hit.

I’ve caught a rabid cold from the hubster so, much as I’d love to go on and on about it, I don’t have the energy.  It’s hard to juggle a parade of soggy tissues and tea cups while trying to type so I thought I’d just leave you with the trailer for the movie.  That way you can get a flavor of it for yourself.

The one thing I will say is that this movie captured the beautiful, uplifting experience I had over and over again with the dying and their families.  It somehow managed to portray a little of everything that’s involved; the grief and joy, anger and humor, the awkwardness that so often arises in circumstances of profound intimacy, the need for forgiveness, the graphic elements involved, the enduring love, and the ultimate affirmation of life that comes when death is received with dignity and grace.  It also captures how the gifts of those who die can pass outward in a spiral, swirling back into the lives of those left behind to aid in healing their wounds, both new and old.

I give this movie two thumbs up needless to say.  Here’s the trailer:

copyright Dia Osborn 2011

And The Death Panel Two-Step Takes Another Turn Around The Room. Damn.

This image from Wikipedia is so great I had to use it again.

 

Well dear readers, I just read the bombshell.  Last week, in The Death Panel Two-Step, I wrote about The New York Times revelation that, in a political style stealth-move, regulation approving Medicare reimbursement for doctors to discuss end-of-life care wishes with their patients was going to be included in the new health care reform policy after all.

When I first read the news I was happy about the policy, but dismayed and uneasy about the secrecy.

Now, my fears are confirmed.  Barely a week later there’s been a complete turn around.  The New York Times is now reporting that, since the news broke, minds have changed and the regulation was re-removed from the policy that went into effect on January 1.  The suspected reason?  The administration needs to reserve political capital for the bigger upcoming battle over the health care reform bill as a whole.

And so the dance around Advanced Care Planning Consultations continues.  For those who may not have been watching closely, the steps so far have looked something like this:

Last year: The original legislation mandating reimbursement for doctors’ time  is included as part of the overall health care reform bill.  Result:  The death panels outcry.  The legislative language is subsequently removed from the bill. 

Then last week: The story surfaces in the NYT that the bit about consultations has reappeared in the bill under the invisible cloak of regulatory language, and it will become law as of January 1.  Inevitable result:  The invisible cloak is ripped aside and the death panels outcry is renewed. 

Today: The New York Times announces that the Obama administration has reversed course yet again.  Result:  Any doctor who takes the considerable time required to educate a patient about preparing for the dying process is going to have to pay for it out of his/her own pocket.  That discussion will now only happen as an act of charity because Medicare won’t pay for it, nor will most insurance companies, nor will most patients (who can be reluctant to have that conversation in the first place, free or not.)

So for the time being it looks like politics will continue to dominate the debate about end-of-life care conversations.  The Left and the Right will continue their wheeling and reeling around the dance floor, locked in an increasingly hostile embrace, both sides far more committed to fighting for the lead than actually listening to one another (or, far more importantly, trying to communicate effectively with us.)

I’m so saddened by this.  I can’t help but think of all the suffering, frightened people this year who will be sliding backwards into the dying process, flailing and totally unprepared, with a very good chance they won’t even be able to turn to their doctor for adequate answers or guidance when it comes.

There’s a lot of blame for this mess flying around right now, and its all directed at the politics that came into play.  But I think that’s all just smoke and mirrors.  Blaming the politicians and holding them responsible for the quality of our dying is a most excellent way to avoid facing a deeper and far scarier truth; the majority of us are subconsciously grateful  for the gridlock because now we still won’t have to talk about the fact that we’re going to die.

Most people are terrified to talk about dying in general and their own dying process in particular.  Deep down, we don’t really want to have that conversation with our doctor to begin with.  We don’t want to even think about, much less fill in, a living will.  We don’t want to discuss with our spouse or children or friends what it’s going to be like as we die.  And we certainly don’t want to look close enough at the gory details involved to make effective, useful plans.

The deeper reason this legislation didn’t pass is not because Democrats and Republicans couldn’t cooperate, but because most of us don’t want them to.  Not on this one.  Who in their right mind goes to the doctor to talk about dying anyway?  Nobody?  That’s the last thing we want to pay good money to hear.  We can die for free.  No. The reason we usually go to a doctor is to find out about all the new, better, and increasingly expensive ways there are to stay alive.   And if one doctor can’t deliver a possible escape route then we’ll just keep on looking for another one who can.

Talking about dying in our culture is still a big taboo and it’s all about fear.  Deep, irrational, primal fear lurking just below the surface, waiting to sabotage any and all attempts to deal with dying directly.  It’s hard to imagine any good legislation being passed until this fear is both better understood and respectfully addressed.

With that in mind I thought I’d re-post something I wrote back in August about just this topic.  The name of the post was Christmas Trees and Death Panels: How Fear Sets a Snare and (if I can figure out the technical details of how to do it) it should be coming up next.

copyright 2011 Dia Osborn

Elders and Technology: An Awkward Pairing

This morning I received an email with an attachment from my out-of-town brother-in-law (BIL) that was actually for my mother-in-law (MIL). 

So if it’s an email for MIL, you ask, why did BIL send it to you

Why you silly twit, I answer.  Because MIL is elderly of course.  She doesn’t know how to email.

MIL has a computer.  In fact she has three; two desktops she bought for herself and a laptop gifted from her son.  But none of them are presently hooked up because, even though she really wants to learn how to email, every time she’s tried so far she hit a wall.  She got overwhelmed and quit, turned off the service again, because computers and technology are just not coming easy for her.

As pretty much everyone knows by now, there’s a huge generational divide where technology is concerned.  My kids, on the one hand, use electronic devices like prosthetics.  They’re physically attached to their laptops, cellphones (with bluetooth, GPS, browsing, cameras, youtube, and wifi capability plus downloaded ringtones and extensive music libraries),  gaming systems, and complex entertainment systems with blue ray and live streaming (and accompanying battery of remotes.)  They communicate via texting, email, IM, Facebook, Twitter, et al, and…once every ten thousand years when the planets all align…they’ll even make a phone call.   They also both have dedicated closets for the graveyard of outdated devices they’ve abandoned over the years.

MIL also has a dedicated closet but she’s abandoned her devices for a completely different reason; she couldn’t figure out how to make them work.  She’s not unusual in this way.  My father and father-in-law (FIL) can’t use most modern technological devices either.  I also ran into this problem a lot when I was working with hospice.  Most of the elderly people I cared for not only couldn’t use a computer, they often struggled just to navigate a simple telephone voice mail system.  Sometimes, at their age, it was because hearing had become a problem.  But even those who could hear perfectly well seemed to have trouble.  They resented the fact that they couldn’t just talk to a person.

This morning it occurred to me that, where the new, modern world of technology and electronics are concerned, most of our elders are like first generation immigrants from the old world.  They come from a different set of customs, a slower pace, a different, simpler world view.  The new language is proving to be sophisticated and difficult for them, and they often get lost trying to navigate a landscape that can seem foreign and incomprehensible.

MIL (almost eighty) is from the old country so emailing, as part of the new language, has been hard for her to learn.  Still, I admire her tremendously because at least she wants to learn.  She tries.  She’s frustrated and overwhelmed by it all, but even so, she’s still tickled by the prospect of laptops, and camera phones, and digital picture frames, and thin, sexy, LCD TVs.  She takes risks and buys gadgets she doesn’t know how to use, hoping she’ll be able to figure them out and sometimes she even does.  Little by little, she really is making progress.

So BIL and I, and all of her children, continue to try and be patient and supportive.  We’re the second, bridge generation, straddling the divide between our parents’ world and that of our children.  Hopefully, in helping our elders, we’ll be able to sort out and harvest the best of their world, then preserve it, adapt it, and pass it down to our kids to be folded into the new one.

That’s what I’m hoping for anyway, because I think an evolving world with deep roots is the strongest, most nourishing kind.

The Favorite, by Georgios Iakovidis (1890)

(Image from Wikipedia)

copyright 2011 Dia Osborn

The Death Panel Two-Step

image from Wikipedia

Remember all the hue and cry about “Death Panels” last year?  Recall how powerful the fear was that it invoked, and how the outcry wound up blocking legislation aimed at reimbursing doctors for the time required to provide patients with information regarding end-of-life care?

Well, where legislation failed, it looks like regulation will prevail.  The New York Times carried a front page article a couple days ago leaking news that under new Medicare regulation, starting on January 1, 2011, doctors will now be reimbursed for the time required to provide patients with adequate counseling for end-of-life care planning.

“The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.

Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.”

As some of you may remember, I wrote about this subject a while ago in Christmas Trees and Death Panels:  How Fear Sets A Snare.   Back then, I was disappointed but not terribly surprised that this legislation failed because it’s nigh-on impossible to legislate something that no one will even discuss.  As someone who worked for six years with hospice and who strongly advocates for end-of-life care conversations, I’m certainly glad it finally passed.

But my reaction is hardly all leaping  joy and ribbon waving.

On the one hand, I’m profoundly relieved that one of the major roadblocks to physician/patient discussions about end-of-life care is now removed.  Even though this policy doesn’t address the real elephant in the room…the fact that most doctors are clueless about how to have that particular discussion with a patient…it at least now provides a financial incentive for them to face into all their deepest fears about death and dying and try to learn how to talk about it.

And I believe that’s a good policy.  To explain why, I’ll refer once again to the decades long experiment in La Crosse, Wisconsin where doctors have been having regular end-of-life care conversations with their patients since the mid-1980’s.  I’m not exaggerating when I say that this one, simple  practice has made the quality of dying in La Crosse  among the most benign, respectful, compassionate, comfortable, and enlightened in the nation.

Having said all that however, I’m still bummed at the stealth used to get this policy instated.

“While we are very happy with the result, we won’t be shouting it from the rooftops because we aren’t out of the woods yet,” Mr. Blumenauer’s office said in an e-mail in early November to people working with him on the issue. “This regulation could be modified or reversed, especially if Republican leaders try to use this small provision to perpetuate the ‘death panel’ myth.”…

The e-mail continued: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.

So why does this kind of behind-the-scenes maneuvering dismay me?  Because it’s going to make having an open, constructive, educational, illuminating, respectful, national conversation about dying even harder than it already was.  (I didn’t know that was even possible.) Far from building any kind of consensus or trust, or making an attempt to listen to or address some of the real fears feeding into the Death Panels uproar, it instead seems to confirm one of the deep fears a lot of people already have about linking how we die with big government: namely, that those in power don’t really care about the concerns or desires of everyone they govern, but are only intent on imposing laws that they believe are best for everyone.

Overall, I rate this new regulation as basically two steps forward for health care policy, and one step back for public discussion and trust.

Sigh.

I foresee, with my magic crystal ball, that setting public policy around dying is going to continue to be a tough dance for everyone to learn.

copyright 2011 Dia Osborn

Update: Snoring Dog Studio expressed some confusion in the comment section as to what part of this regulation I was objecting to.  Great question.  It made me realize I didn’t reference something important that was said later in the article.  I have now included the pertinent quote.  Thanks Snoring Dog!  




A Yuletide Wish

Image from Wikipedia

THOUGHTS FROM THE YULETIDE 2010

Dearest family and friends, old and new;

Greetings from the slushy, drizzling, overcast, and fog-riddled, slightly-far north town of Eagle, Idaho!  We fervently hope the holiday season is bringing you a lot more sunlight than we’ve seen here over the last month, and that your vitamin D and serotonin levels are correspondingly higher.  I really shouldn’t complain of course.  We need the moisture, and the snow in the mountains is a godsend.  But still. We’ve been buried under low, heavy clouds and dense fog for so long now that it’s starting to feel a lot like Venus.

The family is doing well.  Cal’s had a great year at work and, yes, he’s still traveling back and forth to the Northeast every month and loving the job.  Go figure.  A double life really seems to suit him.  And thanks to both good luck and their stellar work ethics, Lorin and Kit survived the transition and still have jobs after Hewlett Packard bought Palm last year, laying off a lot of the old work force in the merger.  McKenna graduates from Boise State University in a few days with a B.A. in English/writing emphasis and a minor in History and has developed into both a talented academic and a sensible, hard working woman.  We really couldn’t be prouder.  As for me, I was eventually buried under the organizational demands of trying to write a book about dying, so I shelved the project and started a blog about dying instead.  Turns out it’s a lot easier to continue to sound coherent in a few paragraphs than it is throughout hundreds of pages.  Who knew?  I have a deepened respect for anyone who writes an entire book about anything.

*          *          *

Well, right after I wrote the above paragraphs two weeks ago the tsunami hit and I was swept out to sea by the combined demands of holiday preparations, graduation celebrations, blogging schedule, joining a gym (not the best timing on that one…), and cramming a block of dental/medical appointments into the end of the year to try and catch the insurance benefits before they expire.  That’s how I find myself sitting here a day and a half before Christmas, stuffed and tired, pressured by deadlines, sweating and sore, screened and cleaned, just a wee bit stressed out, and still trying to think of something warm, fuzzy, and holiday themed to say in the yuletide letter this year.

Merry Christmas?

Actually, I say that carefully.  A few years ago Cal and I took a walk along the river on Christmas day and ran into an older couple who wished us a Merry Christmas as they passed by.  When we smiled and wished them the same, to our surprise they became agitated and stopped to talk.  Evidently, they’d wished someone else a Merry Christmas earlier in the day and whoever it was had bristled and taken offense at the greeting.  Our older couple had retaliated by taking offense at the fact that offense had been taken and, lo and behold, in direct opposition to the spirit of the season, the cycle of bad feelings was up and running, passing on its merry little way downriver to us.

I’ve thought about that one ever since.  I realize there’s often tension these days around what Christmas…and other traditions for that matter…are supposed to mean, how they’re supposed to be celebrated, and whether or not they should even hold the prominent place they do in a secular society.  It’s understandable.  I think we all tend to get a little territorial about the traditions that are most important to us, and it’s only natural to resist the intrusion of other traditions onto our own.

The urge to protect the unique rituals, values, and celebrations that nourish, strengthen, and guide us in our lives is universal.  I know I certainly don’t want anyone else messing with the way I celebrate my season.  But having said that, please believe me when I say that neither do I have any desire to dictate how you should celebrate yours.

We weren’t a particularly religious family when I was growing up, so my parents took the Santa Claus track and really poured themselves into celebrating the magic of Christmas.  They went to great lengths to create as much joy, wonder, and sense of miracle for us kids as possible and, funny though it might sound, some of the most important, foundational lessons of my life were learned from the way they taught us to celebrate the season.

First of all, they taught me that Santa Claus was real. That there actually existed a jolly, caring, magical being who was so generous–so loving and happy–that he devoted his whole life to flying through the world to try and touch, enrich, or bring love to every last, living person in it.  Naturally, this understanding evolved quite a bit as I grew up.  (You’ll be relieved to know I no longer believe in Santa.) However, it also instilled a couple of lasting and important beliefs in me:

1) There are powerful and benign forces at work in creation that sincerely desire my happiness, and

2) Gifts aren’t always given because they’re earned or deserved.  Sometimes generosity is just for its own sake.

Secondly, my parents taught me that sometimes miracles come in the night, and I can’t begin to tell you how much courage and hope I’ve drawn from that lesson over the years.  Throughout my childhood and on into adulthood, it’s helped me to be less afraid of the shadows, to trust that along with the monsters, darkness also harbors miraculous, luminous gifts.  And I honestly think the odd faith I developed from that early lesson helped me more during the lean, dark years of my battle with depression than anything else.

Third, my mom and dad required us, from the time we were small, to think about, select, wrap, and give gifts to each other.  And when we finally got to open them all on Christmas morning, we always did it one at a time, each of us taking turns opening a present while everyone else watched and shared in our excitement.  We circled around and around this way, as many times as it took, until everyone was done and it was this ritual, more than any other in my life, that taught me how the giving and receiving of gifts is really a banquet for everyone to sit down and enjoy.  I learned that whether I’m giving or receiving, ripples of happiness can be created either way, and the truer the spirit with which I do both, the wider the ripples become.

There were a thousand other lessons of course, opportunities to develop qualities like patience and self-control, as well as learning how to manage things like disappointment, envy, and greed.  I’ve continued to build on these early lessons all my life, and I feel like the Christmas traditions practiced by my family were actually fundamental and essential to the development of my deepest sense of humanity.  I’ve always known that my family’s way of celebrating Christmas was neither the “right” way nor the only one, but it was our way and that made it beautiful, nourishing, and perfect for us.  It created magical ties of love, faith, strength, and generosity that bound us closer together, and gave us a way to reaffirm each year the things that my family cherished most.  And I’ve done my level best to pass the same gifts and lessons down to my own children.

I guess this is all just a long way of trying to explain that, if Cal and I wish you a Merry Christmas or Happy Holidays or Peace of the Season or any other kind of holiday wish, it’s not because we’re trying to impose our childhoods, or beliefs, or values, or culture on you.  We’re not.  We don’t believe in that.  We love the fact that everyone gets to find and draw meaning for their life in the way that feels right and true and most nourishing to them.  And we love even more that we all have the freedom to do just that.  No.  All we’re really trying to do with the greeting is make a deep, sincere, and heartfelt wish for you from the language of our childhood joy:

For us Merry Christmas means that, no matter what holiday you do or don’t observe, and no matter how you do or don’t observe it, from the depths of our hearts and with the greatest good will, we wish for you all that is best in your world, from all that is best in ours.

With great love and even greater hope,

Cal and Dia

Wikipedia again

copyright Dia Osborn 2010

Let’s Have a Chat

I wanted to take a moment to talk a little about the delicate topic of assisted dying/assisted suicide.  There are a lot of places, nationally and internationally, wrestling with legislation and, in my opinion, if we’re going to try and do something as ambitious as legislating death, I think we should make a serious effort to get it right.  Because if there’s one thing that everybody agrees on it’s this:

Life is a fragile commodity and the off-switch for it only works once.

The reason emotions are running so high is because the stakes are so big.  Legislation affects all of us so it’s critical we don’t leave something this important solely in the hands of politicians and lobbyists.  Instead of just playing the voyeur by sitting back and listening to the attention grabbers argue about it in headlines and news clips, we the street people, the regular Joes and Joeinas living out here in the real world, need to educate ourselves more, nose around, dig up hidden angles, make sure we look at both the shining gifts and dark underbellies of every side of the argument.  And most importantly, we need to start talking with each other about it.

That’s right folks.  I said talking. About dying.  To each other, across political, religious, ideological, racial, cultural, economic, and national lines.  Believe it or not communication can be a good thing.  Done right, it actually makes us smarter than we were before, more informed and knowledgeable, more compassionate and caring.  True communication (read: listening as well as talking) not only offers our heads more information, it helps us build bridges heart to heart which, trust me, is something you really want in place when you’re hanging out there on the raw and ragged edge, desperately clinging to someone’s hand while you’re trying to tell them that you really, really want to live…or that you really, really need to die.

This is not an idea we’re talking about here people, it’s the real thing. I’ve been there, I know what it looks like.  With hospice I saw both Democrats and Republicans die.  I saw the faithful and atheists die.  I’ve seen pro-lifers and pro-choicers, rednecks and tree huggers, rich and poor, dark and light die and I’m here to tell you that in the end, all those shallow, gritty, surface labels slough off like old skin and the person left lying in the bed is just one more beautiful, luminous, vulnerable, aching, irreplaceable and longed for human being.  Somebody that gave every last one of us a huge gift by surviving this world for as long as they did.  Someone who was our companion, whether we knew them or not, and without whom the pocket of the world they were responsible for would have been something a lot less.

We have got to drop the harsh, combative, divisive judgments we keep stabbing each other with if we’re to have any chance of getting this right.  Every one of us deserves to have the final word on what’s happening to us and our own body, to live and then die in accordance with what’s sacred, beloved, and true to us.  Every one of us deserves to feel safe knowing that nobody will ever, ever, ever try to kill us when we are wanting and longing to live, and conversely that we will never, ever be forced to experience unendurable, unending suffering when we simply can’t bear anymore.

There are valid, important points being made on all sides of this argument that we all need to take into account before any final decision is made.  Because if we don’t, some helpless, dying person (actually a lot of helpless, dying people) are going to become the tragic victims of our legislation and if that happens, we will all be responsible for it.  It will be all our faults for the simple reason that we didn’t make more of an effort to listen to one another and come up with some truly wise, compassionate, thoughtful, and inclusive solutions.

Phew!  Okay.  Enough of the soapbox.  As you can tell, some things really wind me up.

So, do you find it hard to talk about assisted dying/assisted suicide with people who feel differently than you do?  If so, what makes it challenging and what would make it easier?  I would dearly love to hear what others are thinking about this whole subject and welcome your comments.  Some ground rules though:  be respectful, think before you talk, and contribute something valuable to the discussion.  (Hint: Personal insights and feelings are valuable.  Ranting, blaming, and proselytizing are not.  Name calling will be deleted.) And humor is the best!

I’d like to spend the next few posts exploring some of the surprising things I’ve been discovering through my own investigations.  Next week:  Why the disabled are worried about it and why the rest of us should care.

copyright 2010 Dia Osborn

A Parrot’s Grief


We once had two dogs.  They joined the family two years apart, lived most of their lives together frisky and inseparable, then died at the end, also two years apart.  Our big guy died first.  Swift and unexpected.  He was fine and healthy for years and years, and then one day got sick and three days later died.  Just like that.

Our second dog was lost without him.  For a month following his death she withdrew.  She’d still come to us if we called and try to look happy to see us, but as soon as her duty was done she’d slip away to the corner where they used to sleep together and lie down again, eyes open and unfocused and numb.

We were heartbroken for her and heartbroken for ourselves.  We all missed him terribly.

But time worked its magic and one day, for no particular reason, she returned.  She followed me around the house that morning, trying to flip my hand up on her head with her nose again, and my heart eased knowing she’d be okay.  We had two more wonderful years together before she, too, eventually died.

There’s a lot of controversy on whether animals experience emotions, but the suggestion that they can’t feel things like simple grief makes me angry.  I usually try to respect the beliefs of others but, because this particular belief is so often used as a justification for exploitation, neglect, or abuse, I don’t respect it.  I find it suspect.  The claim is far too riddled with conflicts of interest to take at face value.  Besides, in five decades of living, every interaction I’ve personally had with animals and birds, (and reptile, fish, and even a few insects believe it or not) has confirmed that these other strange and wonderful companions I share my world with feel a great deal, even if most of the time I don’t understand what exactly that is.

A case in point:

One of my first hospice patients had a parrot she said she’d smuggled over the border from Mexico twenty years earlier.  She was a wild, untamed kind of woman and her parrot was just like her.

I don’t remember now what kind he was, but he was smallish, maybe a little bigger than Snowball the dancing cockatoo, and he spent most of his time in those final days perched on the valance above the window next to her bed.  I was a little nervous at first because family members warned me that sometimes he flew down on people, swooping at them again and again, testing to see if they would duck and run.  He was a fierce little thing, tolerating only a handful of people and attacking the rest, but he clearly loved and needed that woman lying on the bed and was made achingly vulnerable by her approaching loss.

He never flew down on me.  I used to speak to him gently when I was on that side of the bed, changing her sheets or dressing or incontinence pad, and he’d closely monitor everything I did, anxious and curious, sometimes fluffing up into a ball of down and shaking his head rapidly, raising his wings for a moment like he just couldn’t stand the uncertainty anymore, then settling back down to watch and wait again anyway.  He’d sidle back and forth along the length of the valance, first to the left, then to the right, over and over again like a loved one pacing the corridors of a hospital.  He knew something was wrong and it seemed to fill him with unease.

Once I saw him fly down to the bed while I was in and out of the room, doing laundry.  She was asleep and he seemed to want to just be next to her, to touch her.  He awkwardly waddled up next to her head, curling into the warmth still emanating from her.  He bent his head over next to her mouth as though checking for breath and just stayed there for a long time, frozen, his feathers brushing her lips.  My heart broke for him and I wanted to pick him up, cradle and croon to him, but I knew he’d bite me if I so much as extended my hand.

First her sister told me and then her daughter.  How he wept on her body when she died.  He flew down from the valance to her chest and started nuzzling and nipping at her, trying to make her respond.  Stroke him.  Yell at him.  Anything.  But when she didn’t move he went still and stunned, and it was then that he started making the strange, small noises, noises unlike anything they’d ever heard him make before, like sobs.  His head bobbed slowly up and down to the rhythm of the sounds, and her family just stood there around the bed, surprised and stricken by his grief.

Later, when the men from the funeral home came to remove her body from the room he attacked them.  Viciously.  Angry and hysterical, he dive bombed at their heads repeatedly until one of the men ran  in the bathroom to hide.  The family finally captured him and put him in his cage while they took her body away.

I’ve often thought about him over the years and hoped that he eventually found someone else he could trust, someone he’d allow to love him, to bring him back in healing and wholeness.

Like just about every other person I’ve ever known, the deep emotional bonds I’ve shared with animals over the years have provided me with a well of strength, beauty, unconditional love, and hope.  My ties to these companions have helped shape me, often healed me, and even saved me, more times than I can count.  I really, really hope that some day soon we’ll grow past the economic and scientific need we have to deny the depth of their vulnerability to us, and instead forge a higher, kinder relationship based on mutual respect.  They’ve already given us all so much.  They deserve something far better than what they’ve gotten in return.

copyright 2010 Dia Osborn

Christmas Trees and Death Panels: How Fear Sets A Snare

(I apologize in advance.  This is a long post but there was a lot of important ground to cover.  I won’t do this often.  Promise.)

Like many people, the Christmas tree scene in the original 1972 Poseidon Adventure movie made a deep impression on me.  I was only fourteen when the movie was first released so I was impressionable.  Given.  But even so the scene is a classic.

It’s Christmas (New Years?) Eve on a luxury ocean liner out in the middle of the ocean and the crew and passengers are celebrating in the ballroom under the branches of a towering and heavily decorated Christmas tree.  As per disaster movie formulae, a tsunami formed by an earthquake off the coast of Crete comes rolling across the ocean and hits the ship broadside, capsizing it and tossing the above mentioned assemblage all over the slowly inverting ballroom.  Once the Poseidon settles in it’s new, upside down position, the Christmas tree is lying on it’s side on the ceiling-turned-floor.

Enter: Gene Hackman, a renegade missionary.  He swiftly marshals a group of men to raise the tree again for use as a ladder to access a service door at the bottom-now-top of the room.

We’ve seen a lot of random chaos and horror up to this point but Fear as a saboteur has been suspiciously quiet.  That changes once the Christmas tree option is presented.  Fear immediately recognizes a golden opportunity and steps in to set the first, big snare of the movie:

The survivors each have to make a choice.

Reverend Gene, on the one hand, tells everyone to climb the Christmas tree and head for the hull of the ship, because that’s the only logical place where rescuers could ever access survivors.  Reverend Gene represents original thinking and a challenge to the status quo.

But the ship’s purser disagrees and tells them no, no, no, they must all stay put in the ballroom and wait for someone to find and rescue them there because the ballroom is where rescuers will search.  The purser (read official man in a uniform) represents standard thinking and the status quo, something fatally attractive to anyone with a strong herd mentality.

It was painfully clear to all of us in the theater that the Rev was right and everyone needed to climb.  Fast.  We knew that those who couldn’t rise above convention and think outside the box were gonna die, die, die, horribly and soon.  We knew this because the whole scene was built around a basic rule of human behavior; terror tends to drive thinking out of the cerebral cortex (rational, logical, problem solving) and into the amygdala (instincts, habit, and fear).  Anytime we’re confronted with a new and terrifying situation, if we can’t master our emotions and analyze circumstances objectively then we revert to old mental ruts and knee jerk reactions.

We follow the herd because by god there’s safety in numbers.  Right?

In this case, not so much.  Fear springs the snare, paralyzing just about everyone there.  The majority of people listen to the purser and decide to stay put.  Only a handful climb the tree and, once the chosen few are safely ensconced up in the only possible escape route, explosions sound in the belly of the ship, windows and skylights shatter in the ballroom, the Christmas tree topples back down to the floor, and deep, ocean waters surge in, drowning every last screaming, thrashing person who made the mistake of defaulting to what felt, instinctively, like the safest bet.

Working in the hospice field, one grows familiar with fear and its many, (many, many, many, many, many) snares.  A fear of dying can often drive us to make unwise care and treatment decisions.  From what I can tell, a lot of this comes from the profound lack of education and understanding that exists in this country around the dying process.  The fierce denial we’ve embraced as a society doesn’t leave much room for the cerebral cortex to think about the subject at all, which means that most of the default choices people make at the end remain firmly embedded in the instinctual part of the brain.  How could it be any different?  There are few instincts more powerful than the one to survive and, if we don’t have some extraordinary and compelling reasons not to, we’ll naturally choose to continue treatments beyond (sometimes far beyond) the point where our doctors, or even we ourselves, think we should.

Yet at the same time, most of us don’t want to die wrapped up in tubing and drugged into a stupor, or with flash paddles sending electric jolts into our heart while our family looks on in traumatized shock.  But it happens all the time anyway.  Why?

There are a host of complex factors that contribute to the problem but ultimately one underlying cause rules them all:

We persistently and adamantly refuse to talk about dying.

We play right into one of Fear’s greatest snares.  Fear loves the fact that we won’t talk about dying because that prevents the cerebral cortex from getting anywhere near our decision making.  How can we possibly evaluate what’s been going wrong, learn anything new, or change anything for the better, without some calm, compassionate, respectful, thoughtful discussion about what’s going on?  We can’t.  Our fearful silence gives the old habits and instincts free rein and we default, over and over again, to the same flawed choices.  That’s how, even if it’s the last thing we ever wanted, we still so often wind up cocooned in IV lines without so much as a spare patch of skin for our loved ones to kiss or hold.

This reluctance and failure to talk about dying is the norm in individual cases.  But it happens on the national level as well, and a prime example of it  just played out during the recent health care reform debate.

Remember the small provision in the health care bill (section 1233 of HR 3200) entitled Advanced Care  Planning Consultation? (Otherwise dubbed, in a bewildering but imaginative twist, as  Death Panels.) Amazingly, it constituted only three pages out of roughly 2000, yet it wound up hijacking the debate.  Why?  Because it asked us to start talking about the dying process.  More specifically, our own dying process.  It boldly and openly addressed the current, gaping need that exists for each of us to have a conversation with the doctor who’s treating us about how we want that treatment to look.

But in so doing this tiny provision struck a major taboo.

Let me reiterate here.  The provision didn’t try to address how we’re treated, it just wanted us to start talking about how we’re treated, but it’s authors may as well have suggested we all drink poison Kool-aid.  They failed to understand how profound the fear of talking about dying is in our society, and that failure is a big part of the reason why the whole thing blew up.   

Personally, I think legislation of some sort is a good idea, but this version was doomed to fail.  I mean, come on.  Any politician planning to link death, law, and government is going to have to make a serious effort to engage the general citizenry in a calm, compassionate, respectful, informative, and thoughtful discussion about the whole thing first.  They need to institute a massive educational outreach to explain why a conversation about end of life care is so essential.

They need to do a much better job of explaining its gift.

There are stories out there that we all need to hear.  Stories about how drastically a simple end of life care discussion can improve outcomes for individuals, families, and entire communities.  For instance, we needed to hear about the two studies done by Aetna insurance.  The ones where the terminally ill who had access to both ongoing treatment and palliative and hospice care, cut their emergency room visits by half and their hospital and ICU visits by two thirds.  Costs dropped by almost 25%.  And most importantly, these people reported much higher levels of satisfaction with their care.

We needed to hear about the compelling evidence emerging from the Coping with Cancer study that suggests end of life care discussions not only decrease suffering and costs, but also increase both quality of life and even life expectancy.  As Dr. Atul Gawande explains in his article Letting Go: What should medicine do when it can’t save your life?, “These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.”

And then there is the interesting case of La Crosse, Wisconsin, where life expectancy is actually one year longer and end of life costs about half the national average.  This is because  some far sighted medical leaders in the community got together back in 1991 and started a campaign to get physicians and patients to discuss end of life wishes.  Again from Dr. Gawande:

“By 1996, eighty-five per cent of La Crosse residents who died had written advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions…Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease.  But, in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear…The discussion, not the list, was what mattered most.” (Emphasis mine.)

These amazing stories and others like them are currently opening a lot of eyes to the wide ranging gifts that come from having a simple discussion about dying.

It would have been helpful if we heard these stories before the legislation was introduced.  A few realized their error and tried to get the news out, but it was too late.  Fear had already seized another golden opportunity (politics!) and set its snare.  The term Death Panels rose from the depths, Fear immediately latched onto it like a monster from a nightmare, and our group, instinctual  brain responded with a great big Hell no!! Explosions sounded from the belly of the debate, windows and skylights shattered, and Provision 1233, like the Christmas tree, slowly toppled to the floor, destroying any hope for mutual, constructive discussion during this round.

Which leaves the majority of those who are currently dying in much the same position as the unlucky Poseidon passengers who decided to sit and wait.  They’re still not having that conversation about end of life care choices, so they’re still missing out on the help, relief, grace, and extra time which are its gifts.

But there’s good news.  We don’t need legislation to talk about dying.  We can talk about it any time we want.  We can figure out, right now, who it is we’d like to choose for us if a time comes when we can no longer choose for ourselves.  Then we can talk with them, right now, as long or as often as we need to.  We can tell them about what’s important to us and what scares us.  What we’re hoping for and how hard it is to trust with something this big.  And they can talk with us, too, about how badly they need to know what we want and how scared they are of making a wrong decision.  About how much they love us and how afraid they are of the loss.

Then we can go in and sit down with our doctors and tell them, too, about these frightening, tender, sacred things we’ve discovered about each other and ourselves.  We can give them the vital information they need to have, so they can care for us in the way we want most.

If we can do all that then the legislation that follows will be far more informed, compassionate, and respectful…the kind of legislation that everyone can trust…because we’re finally talking.

If you’d like to start talking about dying and end of life care but aren’t quite sure how to start, here are a handful of reading resources that might help jump start a conversation:

1) Dr. Atul Gawande, Letting go: What should medicine do when it can’t save your life? (13 pages long but more than worth the time required to read it.)

2) Final Gifts (This book is a huge favorite with the hospice crowd…curious, beautifully written, and uplifting.  Good for easing fear.)

3)  Palliative Care Blog (Fantastic resource for everything end of life and palliative.  Contains a wealth of links to other resources as well.)

4)  Talking About Death Won’t Kill You (The title of this book pretty much says it all.)

copyright 2010 Dia Osborn

Update 8/25/10: Here’s some news. Last week New York state passed a bill (The New York Palliative Care Information Act) requiring doctors to offer terminally ill patients information about different end of life options.  It’s essentially Provision 1233 resurrected in state form.  Behold!  The Christmas tree rises again.  What I found most interesting was that the bill was passed over the objections of New York State’s medical society.  The doctors opposed it saying ‘the new law would intrude “unnecessarily upon the physician-patient relationship” and mandate “a legislatively designed standard of care.”’  Truth be told, there are studies showing medicine tends to attract people with the highest levels of anxiety about dying. Doctors as a group tend to be more reluctant to talk about it than the average person, yet they’re now the ones who are legally responsible in New York to initiate the conversation?  Hmmmmm…  What does this bode for the future?  Hopefully, now medical schools and other sources of medical education will provide more training for how to talk about dying.  As Dr. Gawande stated in Letting Go, it’s a skill that needs to be developed just as much as surgical skills.  We’ll see.  In any case I hope this will stir up more constructive discussion!

We Don’t Stop Being Who We Are Just Because Our Minds Go

I’ve been thinking about my hospice work and the extraordinary privilege I had of entering these homes–so many of them different (some extremely different) from my own.  And not simply gaining access but entering as a full-fledged, intimate partner to the families.  The whole thing makes me shake my head in wonder.

These are, on the whole, people who don’t really want me there.   I’m never in somebody’s home because a family was just out looking for somebody extra to add to the mix.  No.  These are people in great pain and tremendous overwhelm.  They’re often near drowning in the extraordinary demands of the dying process and this makes them need—often desperately—extra help to meet those demands.  That’s where I come in.  I’m there because I can offer them the kind of help they need, and they’re only letting me in because they have no other choice.

And I can’t emphasize enough the risk that they’re taking in doing so.  There are a lot of vultures out there who prey on the vulnerable in a myriad of different ways and these families, in their exhaustion and bewilderment and deep grief, are exposed.  And they know it.  But here I am, a total stranger with a belief system that often differs widely from their own, coming in to witness every last, little area of their lives; their pain, their limits, their frailties, and their mistakes.

I hold my presence in their home as a huge responsibility.  I feel like part of my job is to create a shield around them with my respect and reverence for their sovereignty over their own lives.  I’m there to learn as much as I can about the moral and spiritual pillars that they’ve chosen so that I can help shore them up against the flood that’s engulfing them, support them from the level of the foundation that they’ve already built.  Because that’s always the one that will serve them best in navigating the dying journey.

After watching the dying and their loved ones take that journey over the years, I’ve come to believe that dying is not the ideal time to begin questioning one’s spiritual framework.  Furthermore, it’s a bad time for someone else to come in, take advantage of a dying person’s vulnerability, and start trying to stir up doubts in order to convert them to another one.  Hopefully, by the time we start to die our values and beliefs are things that have been built up over time, taken from the many questions, tests, ideas, and experiences we’ve faced in our life.  If we’ve had enough time and done things right, our values should have already been put through the fire, tested and confirmed so that, when something catastrophic finally happens, they’re there to fall back on for strength.  For a person with a confirmed faith in any system of beliefs, trying to switch that system while dying is like trying to jump from one kayak to another in the middle of a class-5 rapids.  It would be both stupid and dangerous.

(The one instance where I suppose it might be of help–introducing a possible set of beliefs to someone while they’re dying–would be if the person was floundering and terrified.  If for some reason they didn’t have a spiritual framework of their own and wanted help finding one.  But they would have to ask for it.   Then I suppose offering them one would be more like pulling them out of the water and into any boat.)

One of the patients I worked with was a centenarian whose mental faculties, at 102, were drifting.  She was a devout, lifetime Seventh Day Adventist, a branch of Christianity which I discovered, interestingly enough, does not believe in heaven.  Her daughter/caregiver explained that Adventists believe a person’s soul, rather than going to heaven, stays with their body after dying, sleeping peacefully with no awareness of the passage of time, until the second coming of Christ at which point Jesus resurrects their bodies and makes them new again.

So this was the belief that this woman had chosen and embraced all her life.  But in an odd twist, it was now contributing to an unwelcome side effect.  Sometimes, in moments of dementia and confusion, she spoke of her mother (who had died years earlier) as lying cold and alone in the ground somewhere—the idea obviously distressing her a great deal.  She’d grip my hand, moaning and crying, and it was difficult for me to distract her.  As she was nearing death she seemed to be experiencing more and more fear about being laid in the ground herself (abandoned!) and, listening to her I was reminded of the way children often misunderstand and twist abstract concepts in a way that frightens them.

It was the first time I was confronted with a question that often comes up with dementia.  Part of me wondered whether–for reasons of compassion–it might not be kinder to give her a different, more comforting, view even if it differed from the one she’d embraced before dementia.  If it could bring her more peace, would it be all that wrong to tell her that her mother was not lying cold and alone in the ground somewhere but was actually up in heaven?  (Which seemed like the closest alternative to her own belief system, but it could just as easily have been some other lovely place if she’d buy it.)  Or should I stick with the faith she’d committed herself to throughout her life, the one she chose when she was still strong, rational, and clear, even though it was now causing her some profound distress?

Actually, the question was strictly hypothetical, an intellectual exercise.  First off, as a hospice worker my duty was always to honor the values and beliefs of whatever home I entered and support the family from those.  Making up something else to suit random circumstances just wasn’t an option.  And secondly, her daughter was a fierce advocate for her mom and, even if I had been tempted to take the easy route and tell her mom a fib, I would have been turned out of the house in a heartbeat.  The daughter would have felt that I’d betrayed them all and she would have been right.

But eventually, in spending time in their home, in listening to the family’s stories of the strength of their mother’s faith and in seeing the comfort and joy she still drew—even in her dementia—from singing and praying in the language of her faith, I drew my own conclusions.

Over time I became certain that, if we could go back twenty years to when she was still strong and lucid, and I could explain what was going to happen and ask her what she’d want me to do, the patient herself would be the first to tell me that–no matter how confused she might become in her final days, no matter how much fear and suffering it might temporarily cause her in her dying process–under no circumstances should I ever mislead her, try to support and care for her from any other basis, than the tenets of truth which she had adopted, embraced and lived by all her life.

It was a good lesson for me and deepened my understanding of what respect really means.  The dying are achingly vulnerable.  It would be so easy in this work to fall into pity and coddling, to take shortcuts to try and ease their suffering, but it would be wrong to do so.  The symptoms of dementia, of oxygen deprivation, of disorientation, exhaustion, and loss of memory, do not in any way mean that a person has suddenly turned into someone weak, stupid, or childish.

As human beings we are far, far more than just a brain that is currently running up to speed.  We’re rich and emotional and complex and unfathomable, as well as a whole lot stronger than we tend to believe.

copyright 2010 Dia Osborn