HUSH

Posted on October 31, 2014 by Amy Getter

train wreckYou are most powerful when you are most silent.”

— Alison McGhee, author

Brian was now mostly quiet. He’d been a man in charge, working and amassing a fortune in the corporate world until his terminal cancer marched forward without restraint. Life had dealt an unexpected blow, and his wife described how hard he fought to remain on top of his game. Yet he slowly lost: first the job, then his energy… ultimately his war on cancer. Still, he spent what little strength he had fretting about things needing attention in his life (projects only he seemed to know about, worries only he noticed).

What amazed us all was his ability to spend the last of his strength exerting control over his environment. But not really a surprise, hearing how his entire life he’d organized every day’s experience. It had seemed that he was in control, until now…his body demanding attention, his strength waning, his voice diminishing; still the look in his eyes when we said what needed to happen next.

His wife had reached the point when she was unable to care for him in the recliner, his favorite place these past few months. So much had been lost, and she wanted to give him this: to die in his chair. But this, too, was no longer in his control. Though he was not talking to us anymore, there was the reproachful glance as we settled him in the hospital bed. He couldn’t say, yet we nodded in silent communion…this was certainly the hardest thing he’d ever done in his life, “coming to the end of his tether”.

How many times as a hospice nurse, aware of how little control any of us actually have, I’ve written and made well-meant comments on “letting go” in life! Yet, when it comes down to the finale, how very harsh the reality: of letting go of all that we know; letting go of all that we thought we managed well; letting go of what we really wanted; letting go ultimately of all that we hold dear and becoming lost in vulnerability.

Brian was now walking in death’s valley with the daily experience of losing. Unable to say what he wanted done, no longer in charge of any of his life, he was settling into the quiet of life’s final breath with a powerful hush…in the end, silently going into that good night…having let go of all of it…with knowledge that the rest of us only wonder about.

Posted in cancer, letting go | Tagged , | Leave a comment

WHAT WE WORK FOR

Posted on October 9, 2014 by Amy Getter

writerSomeone reminded me of a note I wrote a number of years ago, working for a hospice agency that was struggling with staying true to the ideal of hospice in the midst of growth and financial burden and government regulation. It is still why I do hospice work.

What we work for:

  • We work for the patient that we know can be cared for expertly because we have learned the art of end of life care.
  • We work for the satisfaction of knowing we did a job truly well.
  • We work for the words spoken by the family member after the long ordeal is over, “I couldn’t have done this without you”.
  • We work for the ideology of Hospice care and the belief that death truly can come gently in the midst of the painful suffering that we witness, being present at the bedside of the dying.
  • We work for the sad and gladdened, lonely and accompanied, rejected and accepted, pained and pain free, distraught and peaceful, embittered and thankful, uncared and cared for, loved and unloved, who both learn from us and teach us life’s true lessons.
  • We work for each other, realizing that we know what it is to accompany a family down the long road of disability and dying.
Posted in end of life care, hospice | Tagged , | 1 Comment

EVERY BREATH YOU TAKE

Posted on September 19, 2014 by Amy Getter

the air we breathThe phrase, “as simple as the air we breathe”, runs through my mind when I see Dennis, with his ribs and lungs moving with great effort, each labored breath a testimony to his will to survive. Makes we wonder, how often most of us consider the air that flows in and out, seemingly without volition, as every little alveoli fills with oxygen? The anatomical picture where this miracle takes place looks like a stem of broccoli; the air sacs where oxygen exchange occurs are the rubber bands in the respiratory system that stretch with expansion and exhalation so many times a minute, while no one seems to be counting…

Except perhaps Dennis and I. He has become more and more like the Holocaust photographs of thinly stretched skin over rib cage. The athletic prowess he maintained for many years has shriveled with the loss of muscle mass. Now he is aware of each time his chest rises, as he tries very methodically to slowly breathe and think about all those cavities filling with the priceless gift of oxygen, and visualize a healthy broccoli tree.
It is something taught in mindfulness, becoming aware of your breath, paying attention, focusing all that you are in the present moment.

For Dennis, life has been whittled down to this. The simplicity of breathing has evolved into the utmost effort and also the total awareness of each rise and fall. Morphine, that amazing drug that gets the bad rap in our society for being the thing that “made them die”, (though it’s been used over two centuries to reduce pain and breathlessness), is a standard treatment in hospice care. Dennis, like so many people, was hesitant to use morphine to help with his breathing, but now gets huge relief from routine doses, while his diseased lungs are still pumping in that “simple” act of breathing.

As with so many of my patients, I am awed by the strength of the human spirit…how does laughter play in this house… and you, my reader, might find the thought almost irreverent? But it does, as Dennis tells a ridiculous joke; he, his mother and I spontaneously chortle. It’s something Dennis can still do, make us laugh, and it gives him pleasure. His mother smiles and says, “He was always a jokester”.

Nothing is as simple as it appears. Breathing is much more than we know, and goes unrealized until the automation is stripped away, and the awareness of every breath is what defines us. Maybe this is Dennis’s gift to me, to be mindful of the breath, of the air, of the simple things that demand to be noticed. To be thankful for each breath.

Posted in death bed vigil, hospice story | Tagged , , | 2 Comments

DYING, AND LIVING DELIBERATELY

Posted on August 30, 2014 by Amy Getter

what now

With a look of confusion and uncertainty, she asks me “What’s next?”

And Sandy wants to go outside. Though the fog lies heavily over the ocean waves, masking their beauty, we can hear the pounding surf sounds and scattered faint gull cries that pierce the quiet.

Sandy’s faded gaze keeps wandering to the windows, and the door. She tells me in a hushed voice that she wants to go home now. Sandy has loved planning and building this new home near the ocean, the place she worked so hard to retire to, right before she received her terminal diagnosis. But now, her legs won’t support her down the steps to the sand, to the waves that she relished walking along barefoot not that long ago. It all rolled by quickly, the nonspecific symptoms, the stunning diagnosis, the hospital bed in the living room, and the weakness that sucked away the days and nights and left her here; in this bed; in this strange Neverland of waking sleep; unsure if she was still here; unsure if she was ready to go…Waiting to go home.

What’s next I ask myself? What uncompleted hidden wish, what unfinished work, what needed apology, what goal beyond my grasp? What did I miss about today that was part of the beautiful web in this life? I want to learn from Sandy to treasure what I have today. Like others, “I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practice resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life…”*

Slapped again with the unfairness of the day, the timing of death’s sentence, I am reminded to use all the time, all the NOW with alacrity and awareness. Today may be my only chance. It is Sandy’s last few days here. It may be mine. I, too, want to live deep.

*Henry David Thoreau, Walden: Or, Life in the Woods

Posted in death bed vigil | Tagged , | Leave a comment

DYING GRACEFULLY

Posted on August 8, 2014 by Amy Getter

dying gracefullyI read the quote on my candle that says:

“Grace. How you climb up the mountain is just as important as how you get down the mountain, and, so it is with life, which for many of us becomes one big gigantic test followed by one big gigantic lesson. In the end, it all comes down to one word, grace. It’s how you accept winning and losing, good luck and bad luck, the darkness and the light.”*

Not everyone dies with peace and grace. I have many memories from nursing visits that have been punctuated with someone’s suffering, and another’s anger, and families’ aching loss. Today, though, was the anniversary of a truly beautiful death, and I sometimes go over in my mind what makes some deaths so indescribably special. For some, it has been the sweeping expressions of love: visions of a sister singing softly to her dying brother, a mother gently washing her daughter, a husband tenderly lifting his wife to lay beside her. For others, it’s part of an uncanny knowing as time was running out, a dying person’s ability to encircle the loved ones around their bedside, at just the right moment, giving the gift of a peaceful death to those who continue breathing.

A common theme, at every beautiful death I have witnessed, is the lonesome sojourner’s willingness to accept the reality that they are dying, and their desire to diminish the suffering of the loved ones left behind. For some, it’s heard in the wistful “goodbye”, the whispered “I love you”, the tearful “I will miss you”. For others, it is the graceful slipping away, the quiet acquiescence of a dying person’s final hours.

I know it is a hope we all share, when our time comes, to be able to leave this life with grace.

I am thankful for those who have shown me in their life’s ebb just how it is done.

*philosophy box

Posted in letting go | Tagged , , | Leave a comment

DYING WITH YOUR BOOTS ON

Posted on July 7, 2014 by Amy Getter

cowboy bootsSomething I love about my job as a hospice nurse: there are many opportunities to be surprised.  One of my daily mantras is “expect the unexpected”.  As I drove down a switch-back gravel drive in the middle of nowhere, I pulled into a driveway and there in a sun-warmed grassy yard sitting perfectly still on a garden swing among buzzing bees and newly bloomed flowers was a fellow in a crisp white shirt, a matching white cowboy hat, black leather boots and a crooked smile.  I stepped out of my car and told him for a moment I thought he was the garden scarecrow, until he tipped his hat.  He laughed jovially and announced, “I’m Billy”.

Yes, of course, I thought, you are my patient… though you look the very picture of health and personifying, in fact, living while dying.  He shooed chickens away as we went inside to talk about hospice. While we talked over the next hour, I heard some of Billy’s cancer horror story. None of us forecast hearing the word cancer during a routine check-up, and especially when the expectation is to get a prescription for a recurring infection and not be back in the doctor’s office till next year.  For Billy, intertwined in the stark unfairness, chemotherapy failures, and overwhelming life changes was an underlying humor that buoyed his speech and infected the room.  Just as one of the nurses who knew the family well had predicted, I was taken in.  This man, and his caring hoard, would “get under my skin”.

And as I got to know him better, I couldn’t help but rail sometimes as an observer of life’s injustice.  Just when you have figured some things out, just when you have changed for the better, just when the garden is ripening and life seems to be travelling in a more fulfilling, rewarding direction… Billy tells me, “When they get sick of me, I’m taking a bus to L.A.” (We laugh together when I recommended a very bad neighborhood). He and his wife joke about recent quarrels, “Who gets the walker?”

He has the most adventuresome bucket list with things like a trip across country, hunting with his brothers and fishing in Alaska planned, even though the oncologist ominously recommended “getting things in order” and answered the “how long” question with “maybe a couple of months”.

Billy is a constant reminder that attitude is everything.   As I get to know Billy, I recognize some of his blustering and joking camouflages an underlying fear of what it will be like, in the end.  We have some conversations about what this means for him.  He worries he won’t be kind to his family or that he will be the cause of additional guilt and suffering for them. He shares one of the most common fears I hear, that he “doesn’t want to be a burden”.

Billy, like all of us, owns a story that isn’t all laughter, and he spends some time in the end sorting through some desolate memories and letting go of the regrets he wears like a jacket.  His wife assures him that love will cover the messy parts of dying, and his family members are not burdened but in fact they feel privileged with sharing these final days of his life, whatever that might look like.  (They were in fact some hard times for everyone.)

And in the end, what really didn’t surprise me too much was that Billy managed to complete his entire bucket list and die with his boots on, so to speak, catching everyone a little unaware, but going out with great style.

Posted in family of the dying, living | Tagged , , , | 1 Comment

DANCE TO THE BEAT OF YOUR DRUM

Posted on June 4, 2014 by Amy Getter

dance to the beatSome people’s lives are noted for their activism, their ability to inspire all of us.  Not everyone hears the drum in their soul.  And not everyone is recognized in their life as overcoming or possessing a fighting a spirit that can’t be kept down.  “ I will rise” says Maya… and others.  Some people, both the famous and the unknown, listen for the beat and unabashedly dance to the music.

 “A picture is worth a thousand words”, and how I wish I had a picture, other than the mind’s eye visual that comes to me immediately when I think of Shirley.  It was my first visit to their home.   Her spouse met me outside, anxiety emanating from him as he began a barrage of questions about her disease and what was needed to care for her.  As I entered the room, I spied Shirley sitting on the couch, and had to control what my facial expression displayed as I introduced myself.

It is hard for any of us to look at and accept disfigurement.  Cancer that is inside the body growing seems to be easier to handle than the exterior growth of tumors, and I don’t know how people suffering these kinds of cancers cope day to day, but a number of my patients have blown me over with their valor.  

Shirley was no exception.

She told me in her own unique speech, now so affected by the tumor growth,  that she took things “A day at a time” and immediately latched on to my hand, telling me some of her story.  She laughed and smiled and cried and I was incensed that this woman had to deal with such a horrible disease in her life.  So unfair.  So cruel.

I asked her at one point, “How do you manage dealing with the hard things in your life, day to day?”

“Oh”, she says.  “Let me show you.”  She slowly gets off the couch, with obvious pain in her hips where the cancer has settled in her bones, and goes over to the stereo.  There is suddenly a tribal drum beat, and percussion vibrating in the little living room.  And Shirley begins gyrating to this music, while punching her hands in the air as she sings her own lyrics,

“You can’t get me down”, “You’re not the boss of me”, “I am strong”….And she does a booty dance, moving with litheness and rhythm and I don’t understand how, knowing how filled her body is with cancerous tumors.  I giggle and clap, and she smiles and laughs
and dances.  I want to laugh hysterically, or cry hysterically, but I just watch and love this moment. 

As I prepare to leave a little later, she lifts her body painfully from the couch and I say, “Oh, no, don’t get up for me, I’ll see myself out”.  She grimaces with the effort, but says quite emphatically, “No, I need to give you some love”, and awaits my hug into her open arms.  “Oh, what a woman.  Oh the love. Oh the overcoming power of the human spirit”, I think as I walk to my car, with a smile on my face that I can’t get rid of for the rest of my day.  

Posted in hospice story | Tagged , , | Leave a comment

BREAKING BAD

Posted on May 27, 2014 by Amy Getter

breaking badReuse.  Recycle.  Right?

As  I counted the 258 tablets of Oxycodone that a patient’s elderly spouse brought to the adult foster home where he was now dying, I couldn’t help  but think of Walter White’s doomed catapult into corruption and greed, (I admit, I too got “hooked” watching “Breaking Bad”).  The innocent brown bag could have been the means for a serious drug infraction as the adult foster home owner planned to throw the intact bubble packed cards into the garbage.  No, that is not the accepted means of controlled substance disposal!  The Oxycodone tablets would no longer be beneficial to my patient; he could no longer swallow and now needed a concentrated liquid form of pain reliever.  The small grocery paper bag filled with pills that the shaky hand of his elderly wife had handed me had a street value calculated at over five thousand dollars!

Getting rid of unwanted prescription drugs is an ongoing dilemma in our country.  This of course is not the first time I have had to waste perfectly good narcotics, some that are extremely expensive; even all wrapped up and untainted, they still must be destroyed. Regulations from the federal government which demand none of these medications can be “recycled” but must be destroyed contribute to both drug cost and waste disposal throughout our county. There is no program for ensuring unused, unexpired, unopened and intact pain medications can be reused for another person (except the illegal use of diverted drugs, a significant problem everywhere!).  I got to thinking, what if there was a credit, like turning in your bottles or cans for the rebate, and people were encouraged and possibly rewarded to leave their unused medications where they could at least be re-engineered?

In all our advanced technology, couldn’t some brilliant corporation develop a way to ensure these chemicals were not being misused but reused?  Like a water treatment plant that washed and filtered the drugs just like we do our drinking water?  But of course, I am oversimplifying a huge and complicated problem, and a bigger question is why would our pharmaceutical companies that are multi-billion dollar industries choose to develop a plan to recycle their drugs? 

I know it is a ridiculous idea, and like I say I did get hooked on “Breaking Bad” which is my only excuse for even pondering narcotic recycling.   Sometimes our ideas get us into A LOT of trouble.  But somehow, in a society that is conscious of waste and attempting to find ways to lesson our impact on the planet, we have regulated ourselves into wasting literally millions of dollars worth of pharmaceuticals.  At least they are now no longer flushed into sewage which is then recycled into drinking water, (though I cannot help but wonder what will happen to our contaminated soil as time and leaching dissolve these drugs into the earth). 

Cost of attempting to reduce the use of illicit drugs: in excess of 25 billion dollars spent annually on the anti-drug war.  This global issue being fought internationally has no solution offered for the bags, cartons, wrappers, syringes, and various containers of unused prescription drugs that a person no longer needs.  It is not just the specialized labs and narcotic rings that are producing drugs to sell; it is also our legitimate pharmaceutical companies, and insurance companies, who allow someone to have a 90 day supply of pain medication filled (even though pain management changes sometimes quite rapidly as someone’s disease progresses, and the medication ordered one week isn’t used the next). 

Though the DEA stipulates that law enforcement can take back controlled substances, very few “take back” programs exist for controlled substances from state to state.  Fraught with difficulty due to destruction and disposal, there are very limited options for states to manage “taking back” narcotics, and all programs are wasting the medication, there is no “recycle” going on.  People can and do have excessive numbers of narcotic prescriptions filled at their local pharmacies.  The flip side of this is a person who really needs pain medication sometimes cannot obtain enough to adequately manage their pain, because physicians prescribing controlled substances feel scrutinized and everyone is aware of this massive problem but no one can offer a solution. I, too, am at a loss.  But I feel this huge sense of guilt every time I waste unused narcotics and wish there was a way to avoid it.

So I am hoping that those of you who were captivated by Walter’s depraved use of his intellect and manipulating of everyone in his life might have been inspired to come up with a new way to manage not just pharmaceuticals in general, but also the incredible waste of expensive opiate drugs in this country.

Posted in controlled substance | Tagged | Leave a comment

A FAIRY TALE?

Posted on April 23, 2014 by Amy Getter

man with daughters

Once upon a time there was a man who lived with his two daughters in a lonely clearing in the woods.  They had moved in and cared for many of the things that their mother had always done, after she died and left their father alone to cope with his disease.  He tended to his strawberries, chased away the deer, and grew rows and rows of vegetables…until one day when he wasn’t able to get around in his garden anymore.  He told his daughters that he wanted to take the pills to be done with his life and they argued there was so much to live for, still.

On the other side of the mountain along the lazy river lived an old widowed woman with her two sons.  Her greatest desire had been achieved: to watch them grow into men that she admired.  She rested in her favorite chair and watched the river flow by her picture windows…and was keenly aware that she was dying of the insidious cancer that was stealing her bones.  She desperately sought to avoid becoming a burden to her sons.  When she asked for the pills that would end her life, they erected many obstacles to avoid having the doctors actually prescribe the medicine.  They were certain she only wanted to feel as though she had a choice, and some control, and would never use the pills anyway.

Time went by.  The father chose his favorite foods for his “last supper” as he affectionately joked with his daughters, saying they were excellent cooks.  Those two daughters had talked long and hard about not wanting him to end his life so soon, but he remained determined and they supported him however they could.   While he sat reclined in his chair, his body wasting from the progression of his illness, he took his medicine and lovingly told them good bye. They cried.  And they knew he had chosen his own way, while they watched the color fade from his face as the 20 minutes passed and then his breathing stopped.

The river quietly bubbled outside her window.  The mother asked many times in the last three weeks of her life, “What should I do?”, as she was less able to think straight and her tired body could no longer respond to her requests.  Her sons cared for her when she could not get out of bed.  They turned her and changed her, and fed her small bites until she could not open her mouth any longer or swallow.  She lay inert in her bed, and they clucked about her, so careful to do everything right.  When she breathed her last, they sat for a very long time at her bedside.  Uncertain what would be next, And they wondered aloud, “What will we do now, with this hole in every day, without our beautiful mother to be a part of our life?”

Death is not a fairy tale.

 There are no easy ways to approach it and life is quiet simply…complicated.  Whether we hasten the moment or prolong the day, it will come as it always has- for everyone.

 The father had a slight smile on his face.  The mother had a sweet look of peace on hers.  They would be forever remembered, and the choices that made their passing uniquely theirs would remain memories and questions for their children for the remainder of their own lives…forever after.

 

Posted in family of the dying, hospice story, telling stories | Tagged , | Leave a comment

GIFTS OF LOVE

Posted on April 6, 2014 by Amy Getter

old manBefore setting out on my lengthy road trip to an outlying area of the county, I had received the warning that the spouse was a“curmudgeon”.  He had been overly harsh and grumpy with the staff that only yesterday had him signing forms to bring his dying wife on to hospice services.  As I drove past the greening fields with lambs leaping and cherry trees blooming, I was happily ignorant of what awaited the family in the old house, perched above a winding, isolated drive amid farm and field.

I found him sitting in a darkened room next to her bed, gripping her pale hand as though he could prevent her from slipping farther from him.  She had her eyes closed but when he said “The nurse is here”, she opened them slowly and barely acknowledged me.  I saw a far-away look, filled with yearning.  Then she smiled sweetly and lightened the atmosphere of the room. 

She told me in a whispered voice, “I love your name”, (it was the same as her granddaughter’s, he explained) and “I am so happy to have you in our home”.  I knew immediately, here was a woman, an eternal hostess, who had cooked and cleaned and welcomed many to this quiet country place.  She was the embodiment of that expression we use, the “warm stove”, kindness and harmony oozing from her, making the cocoon of her warmth a place to linger and enjoy.  No wonder he remained at her side.

We visited a little about the years she and Bob had spent loving each other and family and friends throughout their life together.  That reference to a couple being “love” and “will”
floated through my mind, and I was certain she was the love, he the will.  I
could picture the house filled with her baking and his home grown vegetables
from the bountiful garden which now lay dormant as his days were filled with
the daily chores of caring for a person who can no longer get out of bed.

I always have the “nursey” things to do when I make a visit, checking this and that and asking intrusive questions and looking at the physical aspects of a person.   I care for the body’s symptoms and attempt to leave family members with a sense of confidence about meeting the care needs of their dying loved one; giving instructions is a significant part of every hospice visit.  But so often I learn something, and I am certain my patients and families have taught me as much or more than I have taught them.  This interconnectedness to the essence of a person: it is the joy of hospice nursing and the most
satisfying part of my contact with each patient and family.

Not every visit has such an overwhelming sense of the “other” part of a patient, but today I was struck with how deep the waters run beneath the surface of a life; and how vast the hole of her loss will be in his life when she is gone.  I felt it myself, an overwhelming sadness that this gentle, loving person had so little time left here.  When preparing to leave, she pulled me toward her to give me a kiss on my cheek; to me, just a stranger, come to do my job as a hospice nurse.  I was gifted with some of the love and goodness that was her essence.

 I knew then he was not a curmudgeon, just a simple man who had been loved long and well, and whose life would soon be bereft of the better part, this woman immersed in loving kindness.  So little we, any of us, could do for him to alleviate the painful waves of
anticipatory grief, while he grasped a hand with only a little life left in it.  But the gift of understanding and compassion is not difficult to share, as all of us have suffered loss.  I could leave them both with this.

“The invisible weapon, always victorious, is the incessant act of love”  Sister Consolata, 17th Century

Posted in family of the dying, hospice story | Tagged , , , | Leave a comment