THE LOVE CALL

Posted on June 28, 2013 by Amy Getter

whisperThat unmistakable “AAAAAAAmmmyyyyyy” heard down the street from my childhood home was my mother’s voice.  None of my friends’ moms had an operatic singing voice that floated throughout the neighborhood calling the other children home for dinner.  Just mine.  We girls teased her and would make our own voices shake with vibrato to sound like hers.  And I smile thinking back…one of mom’s favorite old movies, Rose Marie, with “Indian Love Call” * being sung, the “I am calling you, oo-oo-oo-oooo,” ringing around my house as I grew up.

This strange memory combines with a new experience, as I sat at the side of my patient, literally taking his last breaths.  His wife had left the room briefly to call her sister, letting family know this turn of events was happening very suddenly.  I walked quickly into the next room to tell her he was going.  She came back to his side, and we watched his color disappear and his last gasp occur.

She took his hand, and said “Goodbye, my love, rest in peace”.

The voice of a dear one: heard.  

As we sat together, each holding a hand and myself unobtrusively checking a pulse, his heart began to beat again, and a long breath escaped.  She and I looked across him, at each other, and sat quietly stunned.  After a few more slow, slow breaths, I said “I think you called him back”.  I shared about the Buddhist tradition that a few of my patients had explained to me, about not touching someone as they spend those last few minutes or hours, in that strange place between this life and the next, and the belief that a person was working to make that final transcendence.  She asked if she should tell him it was okay to go.  Yes, I agreed.

Leaning close, in a whispered voice she lovingly said, “It’s okay to leave.   I will be fine.  You can go now.  I love you.”

We sat, hands at our side, without touching but quietly watching.  One final sigh escaped his lips.

Truly, I heard a love song sung today.

(Oscar Hammerstein)

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

END OF THE WORLD

Posted on June 14, 2013 by Amy Getter

end of the worldWhen the Netflix envelopes arrive at our house, it’s often a potpourri of strange movie picks.  This week was no exception.  I’m not sure I had ever seen the movie, “On the Beach” from 1959-a classic I guess- but I can’t seem to get away from hospice thoughts!

This is a story depicting life after the world’s final war poisoned the earth with radiation, and the remaining people in Australia are awaiting the drift to reach their soil and water supply, knowing that they, too, will perish.  There is a scene in the movie with people standing in a long line waiting for the government issued pills to have on hand, the medication that will end life when a person gets the signs of radiation sickness, in order to avoid a slow, painful death.  There are multiple scenes of people “eating, drinking and making merry”, knowing they have only a short time left.  There are people who find ways to love each other in spite of the futility of beginning new relationships.  There are people who don’t have a clue how to let go, or say goodbye.  It’s Hollywood’s version of the “six month to live test”.

What would you do, where would you go, who would you live with, if you only had six months to live?

And in the end, how would you say goodbye?  (You know, those five things to say: I’m
sorry, please forgive me, I will miss you, I love you, and Goodbye?)  I’m impressed when Hollywood makes a movie that doesn’t have a happy ending, and considers the thought that we will all die, perhaps by some mass disaster, but in the end, on our own… and how we go, well….that’s still pretty individual. 

I have seen so many goodbyes and said a few myself, but not my own final one.  Another movie, another quote, (from Life of Pi), “I’ve left so many behind…I suppose in the end the whole of life becomes an act of letting go, but what always hurts the most is not taking a moment to say goodbye”.  We have moments to practice and reminders NOW, so when our time comes, perhaps it will be more beautiful than painful, more graceful than grasping, and in fact just a dot in our own continuum of what we were, what we are, and what we will become.

Posted in celebrating death, goodbye | Tagged , , , | Leave a comment

UNFINISHED BUSINESS

Posted on June 1, 2013 by Amy Getter

unfinished business

We marveled that he was still breathing, this shell of a person who had been dying for so, so long. His wife had told him-days ago- it was time to go, she loved him and would miss him, but she would be okay.  I asked if everyone he would want to see had come, and all had said their goodbyes. There were no goodbyes left to say.

His mouth moved in those last hours, and his sister asked if he was waking up.  No, I told her, he was trying to say goodbye.

Although I have seen so many deaths, and been witness to the many variations of how things look at the last hour, I could barely watch his dying.  Sadness and exhaustion hung in the air. His wife and I talked quietly, wondering what held him here.  “There was so much he wanted to do, but he ran out of time.  So much unfinished.”                                   Ah, there you have it.  The unfinished business… Of life.

Do we ever really finish?  I thought back to all to the patients over the years, the ones who faded quietly, seeming to accept each part taken away, and able to let go gracefully right to the last breath. They, too, had wanted to live longer, complete their dreams, and   experience another year, day, even hour. How could they be so different, and reach a state of peaceful acceptance towards the end of their lives which was not spoken but written on every line of their face? 

This face, so wrought with the turmoil of leaving his unmet goals behind, would haunt me for a long while.

“Carpe diem”, I keep thinking. My lesson: Now.  Today.  This moment.  Make it count.  No unrequited desires, no festering regrets.  And keep working on relaxing my hold on what is transient, and looking at the sky more, listening to the earth’s song of sweetness, hearing life’s  call to gather and love each other, and realizing I am only here a short while.

Posted in death bed vigil, end of life care, family of the dying, hospice story | Tagged , , , , , | Leave a comment

TRAVAIL

Posted on May 18, 2013 by Amy Getter

neck painI was jokingly told this quote last week: “Man is the head…..but woman is the neck and she can turn the head anyway she wants.”*

For Bob, this is no joke, but his daily reality: his wife moves his head for him now that his neck muscles no longer provide support and lack the innervation to make movement possible. His emaciated reptilian body still moves, out of sheer will power, and I continue to be amazed that he remains upright. 

Bob had said repeatedly when the time came and he was unable to be up and about that he would want to be “done”.  This time is fast approaching, and he knows it. 

He had talked with his doctor about Death with Dignity, thinking that was the route he would take.  His doctor (being opposed to DWD) had said it wouldn’t work for him, since by the time he would want to use it he would not be able to self-administer the drug, and “we could sedate him when the end came”. 

This morning he wished he had completed the DWD process, but now there’s not enough time left.  I don’t think his doctor realized the space between “now” and dying, and what that would look like, or feel like, for Bob.

“Life is pleasant, death is peaceful.  It’s the transition that’s troublesome”.  (Isaac Asimov) 

As I read his written notes, the pouring out a soul in anguish, and watched his bony frame barely able to coordinate the motions of ambulating, the word travail came to mind…the deep primal groaning of a woman suffering in labor. 

I wish his doctor was here. I wish the opinions of others weren’t so freely shared.
I wish judgment was withheld more.  I wish acceptance was offered freely and frequently.  I wish a new body was available for him.  I wish that all suffering was ended.

“For we know that every creature groaneth and travaileth in pain, even till now.”    (Rom 8:22, The Bible)

*from My Big Fat Greek Wedding

Posted in ALS, balance, bereavement | Tagged , , | Leave a comment

IN A MIND’S EYE

Posted on April 24, 2013 by Amy Getter

crazy old woman

In past years, mental illness has been nearly as taboo to talk about as death, dying and the like.  How about a person with mental illness who is dying simultaneously?  Jane has had a hand full of DSM-IV labels tagged on her for a number of years, and spent time in institutions to try to normalize and repair what is broken inside her. She has an unmistakable look in her face that tells you she struggles being in this world with the rest of us.  She often gazes with a blank stare that makes you wonder, where does she go in her mind? 

But not today.  She’s been outside in her wheelchair and has loved ones at her side, and she is participating in their visit.

I had to laugh when her husband told her that he was really glad she wasn’t talking so crazy, and her quick come-back was, “Maybe you thought it was crazy talk but it made perfect sense to me”.

How much of “crazy” is in the eye of the beholder? I asked myself.  

I am relieved and pleased that both her pain and mental anguish have lessened and she is having some good days; she tells me so with a smile that doesn’t completely light up her eyes, but I have grown accustomed to that blunted look she has.  I wonder, when she rambles on and doesn’t make sense to the rest of us, does she live in Jane’s world and prefer to be there, because being here in this world causes much pain? 

She calls out at times for her twin sister, who has been dead for a number of years. She suffers within, in ways we don’t fully understand. She sometimes cries inconsolably, and other times, appears to have a total absence of feeling, as though she has catatonia.

But she is present today, and able to reminisce and consider the sunshine that has made the flowers bloom outside, and she says with a sigh of gratefulness, “It is such a beautiful day.”

Yes. Thank you for reminding the rest of us, Jane.

Posted in end of life care, hospice story | Tagged , | 1 Comment

THE FIDDLER

Posted on April 7, 2013 by Amy Getter

fiddlerI watched an old movie last week, Fiddler on the Roof. We all ask what is the fiddler doing up there?  Tevye, the main character says, “Every one of us is a fiddler on the roof, trying to scratch out a pleasant, simple tune without breaking his neck.  It isn’t easy…”  Somehow, the fiddler on the roof finds a balance.

I watch as my patient with a rapidly debilitating neurological disease is losing his ability to be upright.  Yet, he propels himself forward, leaning his torso first back at a crazy angle, then to the front to gain momentum.  I have to grip my arms to my sides not to reach out and grab him, fearful he is going to fall.  He doesn’t want me to help.  And yes, some time he likely will fall.  But not today. 

He has things he wants to get done.  He tells me, in the voice that is now becoming breathless and nearly unable to form words, that when he can’t move anymore, he doesn’t want to be here.  But there are so many things that he wanted to do, and now he knows that there isn’t time.

He wrote a note for me, and as I read it I realized how hard he’s working to keep his balance.  Wistfulness and grief were in the words written simply, “I thought I would have the next twenty years to do this, I didn’t think I would be dying now.  I’m very sad.”  

The other things he has written were about symptoms that if I added this medication, or changed the dose on another, the symptoms would at least improve; not go away, but be better managed.  I make some suggestions. 

Then I tell him, “About this other part, the dying.  There isn’t a pill to fix this.”  He smiles and shrugs his shoulders and whispers, “I know”. 

He still laughs, and makes a joke about the bowel thing that we always have to talk about.  I think of the fiddler on the roof, and I hear the sweet, melancholy music that he plays
as he strikes a simple tune, and keeps his balance. 

“It isn’t easy…”  The word Brave comes to mind, beyond what
most of us can imagine.

Posted in balance, brave | Tagged , , , | Leave a comment

THE LONG AND WINDING ROAD

Posted on March 22, 2013 by Amy Getter

long and winding road

I left the home of an elderly man, having just pronounced him truly dead: his wife told me she kept touching his face to feel it, still warm though his breath was long gone.  I pondered her words spoken in reverence, “We had a beautiful life”, both of them almost ninety and she could make such a statement. 

I was awed.

Always cognizant of the strangeness of going into a home to tell the family that indeed their loved one is dead, and taking care of the “business” of “post mortem”; I am at the same time acutely aware of the heavy emotions pervading the atmosphere, and the blanket of grief that lays across the threshold of the home as I leave it.

I headed up the highway towards my next patient.  I kept thinking of the song, The Long and Winding Road; that leads me to your door; and I considered the strangeness of
life…  

Death and Life, intertwined in my travelling.  Majestic mountains were looming out my windshield, just a hint of spring turning the oaks a sage green color, edged with towering firs.  Wrapped round the base of the mountains like a necklace was the river simply teaming with life.
The deep blues and grays of the sky were reflected in that same racing river that I followed, and yes, I kept reminding myself to watch the road but couldn’t stop gazing out the window, not wanting to miss the view: like a lone eagle, perched above the twisting river in a gnarled dead tree, surveying his territory.   

Thankful for that, I felt reconnected to life.

I see a patient up this river road, and her name is Alice. I call her Alice in Wonderland, because of the magical sense I have each week when I make the trek.  Especially on this
day, I felt the magic of life, the unending journey we are all on together, though death is part of it; death is not the end of it.  Life keeps repeating itself, resurrection reminders like the harbingers of spring that I see along the road in the fresh green sprigs dancing gaily as my car speeds by… along the road we all travel.

Posted in cycle of life, end of life care | Tagged , , | Leave a comment

ON BEING CURIOUS

Posted on March 14, 2013 by Amy Getter

good samaritanSomeone once gave me a good piece of advice: remain curious. Never stop having an interest in someone’s story.  There are surprises when we least expect them!

I recently met a woman, frail and insignificant seeming, living in a trailer, who had traveled the world, over 35 countries, and served in World War II as a nurse.  I was told she cataloged much of her travelling in photography and had video footage of Vietnam in areas that no longer exist, and she met the Dali Lama.

Stories I never would have guessed about her.  Then I discover, as I am talking to what I think is her granddaughter, that in fact, she has no offspring, and was widowed a few years back.  Her neighbors, who have lived near her over twenty years, have taken her home after the last of many falls- finally landing her in the hospital.  They knew she could no longer practice the fierce independence that had served her so well for the ninety plus years of her life.  They are providing the care she needs so she doesn’t have to “die in a nursing home”.

“She would hate that!” they tell me.

I remarked, in complete amazement, how surprised I was, that they would take in a neighbor and provide the kind of day in and day out care required of someone dying.  I was told, “That’s what we do, take care of each other.  What else are neighbors for?”  (I don’t mention some of my past neighbors, who wanted to sue over boundary lines, or break multiple branches off of shrubs they felt encroached in the street as they rode their bikes by.)

“Wow,” I said, “I don’t think you guys are ordinary neighbors, I’d call that living the golden rule, for sure.  We should all have neighbors like you!”

They laughed and assured me it wasn’t that unusual, nor was it the first time someone in the neighborhood had died with the support of the rest of the neighbors. For a moment I was pretty sure I had landed in utopia.

I thought of all the countless times I have been surprised by patients and their caregivers; what looked simple and straight forward, or the person who appeared to never get very “far” in life, or the caregivers who on first look seem inept, or unlikely- all the appearances that in fact were so different from the facts.

I remind myself to not assume, or take anything for granted.  Every day holds surprises for us, if we just remain curious and look for them.

Posted in balance, good Samaritan, hospice story | Tagged , | 1 Comment

COUNTRY MOUSE AND CITY MOUSE

Posted on February 14, 2013 by Amy Getter

country mouse city mouseAs I exited the car, I dodged a large “shoe magnet”, as we affectionately call the remains from dog walkers who don’t bring a baggy for their dogs in the morning.  Another nurse and I approached the entrance of a homely, flat-top stucco building. I was aware of the sounds of dishes clanking- coming from the industrial kitchen to my right.  A friendly face greeted us at the front desk.

People mention the “smell” in a nursing home and yes, even an assisted living, (mostly due to years of caring for incontinent people- and the odors sometimes permeate flooring and furniture).  I’ve been in waaaay worse, but was still cognizant of that “old” smell.  The staff was curious and open.  I noticed the water container at the nurses’ desk held sliced strawberries to sweeten the flavor and thought, “nice touch”.  

The other nurse and I entered the room of the patient who had the day before been moved to the facility, on a respite stay, (to give her caregiver a rest).  One of the first things she said was “Thank God you helped me get here, I feel so much better today.  The girls are so helpful,” and I found myself a little surprised that she didn’t have complaints: about sharing her room with a stranger, or the lack of refinement in her surroundings. She had been more and more confused while forgetting her medications at home; and her spouse was incrementally more ill with his own health issues. 

A couple of days following our visit, I discovered that her spouse had suddenly died in their home, almost as though he knew she would be cared for now.  The facility was happy to keep our patient and provide the care she needed, as she, too,  moves forward in her own dying -without worrying about who will care for her. 

I thought back, to not so long ago, at a visit I made in the “big city”.  While I stood waiting for the valet to bring my car around to the front of a circular drive, I took in the meticulously landscaped “welcome area” of a multi-story classic brick building.  I glanced through the floor-to- ceiling windows at a fireplace lounge with overstuffed chairs on either side, while noticing the “concierge” at the front desk behind an artful flower arrangement.  I was pretty sure I was actually at a plush 5-star hotel, not an Assisted Living Facility in downtown Seattle.

I chuckled to myself a little.  Is that the way to an elderly person’s heart, making them feel as though they enter the Waldorf and not a place where people need to wear a bib while eating lunch?  Well, not everyone wears a bib, just the people on the upper floor who have memory issues and require considerable assistance with their daily care.

 I have a sense this “assisted living concept” is a lot like people who LOVE to go on cruises, versus the people who have a huge dread of being cooped up with hundreds of other people, in the guise of vacationing.  Either you
love it, or you hate it.  Sometimes I think I know too much, because even though there are Chihuly glass art objects in the foyer, this is still a place where a number of people are sick, progressively more infirm, and will need a lot more than valet service. 

Or perhaps, the ultimate valet service?….a hospice team to help usher them in to their next destination?

So, although the outward details seemed very different, and the big city is replaced by a much smaller community, my patients here and there felt cared for and secure, knowing the facility staff and their hospice team would be there for them in the final chapter of their lives.  I’m glad people have options, and loving hands that help them move from the here and now to the next step along their journey…and I’m glad to be part of their end of life valet service.

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

THE TRUTH ABOUT DWD

Posted on January 31, 2013 by Amy Getter

who died and made you god“Thou shalt not kill” in Hebrew means “thou shall not murder”.  Perhaps it seems a moot point, but there is a difference between the two English words. Thou shalt not shed innocent blood unlawfully, via murder, destruction and ruin….an act done to someone certainly not by their choice.

I attended a talk last week with a renowned hospice and palliative care spokesperson, He discussed the things that doctors do not ever become a part of; killing is certainly not a part of the Hippocratic Oath.  First, do no harm.  This person is an antagonist to the physician assisted suicide legislation, and although his talk was entitled Mortality, Morality, and the Meaning of Life, he made a point of circulating a published handout of his written opinion about the Death with Dignity law in Oregon and Washington.  In the local paper’s description of him, we
are told he is “now one of the leading proponents of compassionate end-of-life care in the United States….and a consistent advocate for the rights of dying patients and their families”.

During the discussion post talk, a number of questions were posed regarding his opinions expressed about “physician assisted suicide”.  I have heard these same comments from others before and would like to clarify a number of statements that are actually not according to practice or law both in Oregon and Washington. 

Firstly, he mentioned a doctor should not be present and assisting a person to end their life just as they should not be present and involved in capital punishment; nor should a physician partake in torture.  Let’s clarify:  A physician is not present during a patient’s use of the death with dignity medications.  Secondly, a physician validates that a patient is cognizant of his actions and able to make
the decision regarding their own wishes.  This is the patient’s decision to commit an act, autonomously, not something done to them (as in punishment by death or another person torturing someone). 

It is ethically and morally wrong to equate physician assisted suicide with capital punishment or torture, or murder.  To my knowledge and according to the law in both Oregon and Washington, a person is evaluated for competency and terminal disease by two physicians, and one of them writes a prescription for the
medications.  This is the measure of “involvement” by a physician. 

PHYSICIAN ASSISTED SUICIDE IN THE STATES OF OREGON AND WASHINGTON IS NOT A PHYSICIAN ADMINISTERING MEDICATIONS TO A PATIENT.  NOR IS IT SOMETHING DONE TO A PATIENT. It is the recognized right for a dying patient to obtain the medications necessary to choose the time and place that they take their last breaths.  The process of taking the medications, and the decision to end one’s life perhaps days or weeks before “nature takes its’ course” is fully and totally the patient’s decision. 

In an era of providing people empowerment and the right to self-determine, I am surprised that physicians still desire to play God and decide what information is shared with a patient and family, how options are presented, and whether or not a patient’s right to choose the timing of their death is up to them.  As a nurse who has cared for hundreds of dying people including those who chose the Death with
Dignity option, I hope that all my patients are given the power to choose how
they live their life, and how they choose to end it.  

Posted in end of life care, who died and made you god | Tagged , , | 1 Comment