[coralynwoodson]

My story is a similar one of an active death last month. The lady I am referring to was 97 years old. She lived in the community in which I grew up in. She was a very pleasant lady, a teacher, a neighbor, a friend who inspired all of us younger children when we were growing up. On the afternoon of her death, her 93 year old sister came by to visit. She looked at the patient briefly and said, "I'll be back, I'm going to run my niece home". I saw the changes on this patient's face as her sister said these words. I told her sister, "don't go, you need to stay". She said "why"? I said "because she is getting ready to go in a few minutes". The patient, who had not opened her eyes in two weeks, looked up towards heaven and began mouthing words to someone. This patient who was too weak to cough or sneeze, held her right hand up towards heaven. She began talking but nothing came out. As best I can tell, she was saying,"I'm coming...I'm coming'. After she said 'okay', she blinked her eyes one time then stopped breathing. Her sister was so awed by this that she became overcome with grief. Her sister asked me "how did you know"? I told her, when the 'spirit' communicates to the one who is being called home, you can see a transfiguring change in their face and demeaner. She had received and answered the calling right before our eyes.You can't help but recognize that the person is receiving the call to come on home. This was the most beautiful death I had ever seen since I have been doing Hospice Nursing.

[finn11707]

I am so sorry Michael. You, your wife and her aunt deserved so much more. Yes, I think many Hospice agencies have scaled back supportive services so much that it is not recognizable as Hospice work. Obviously, Hospice staff are in Hospice because they care about easing pain and suffering. Possibly, on some level, also sense that this work can have great value for themselves. Perhaps there is not nearly enough good and practical instruction, conferences, retreats for hospice staff. Ones which focus us on the true nature of our work as well as teach ways to honor and disspell grief, stay healthy, be fully present. I have been to many Hospice conferences, workshops, retreats, inservices. It is the exception to find even a small portion of one that addresses this info.

I experienced some of the same ambivalence - about telling or not telling - when my father died a year ago. I chose to tell, since the other 'strong voice' in my family is my sister who is an ED Nurse Manager. She fights to save lives as voraciously as I advocate for a person's right to die a good death-their way. The nursing staff in the hospital caring for my dad were cooler toward me after finding out I am a Hospice nurse and that our family had decided to discharge dad home with Hospice support. The attending physician was kind and generous with his time and consultation; supporting our large family through the process of reviewing dad's status, and agreeing with our decision to stop treatments, take him home and allow him to die, as he wished. What a learning process it all was for me! To find that we were sort of one of 'those' families...We struggled to find agreement over details of decision-making, comfort med use, even when others (even family) could visit to support and care for dad. I ate my hospice nurse pride and took a very back seat to my sister's firm plan. I think the attending Hospice staff were were relieved that no open conflict ensued. They seemed to totally understand my sister's need to care for dad her way, keeping him as long as possible in her effort to heal long standing wounds. They offered non specific sympathy to me to let me know they felt the situation.

I am present for families and patients in a very different way now, through conflict over end of life care issues.

And, we can't learn all of your wisdom if you are always upbeat!

[nettie01]

Thank you for all your comments. This site continues to be helpful and interesting.
Jeanette
New Zealand

[req_read]

Things worked out well for my wife and her Aunt in the proverbial end… and in a variety of other ways as well. For one thing, we decided to relocate down here close to my wife’s father (Aunt Kay’s brother) who is getting on in years. Aunt Kay wanted us to do that. As my previous story illustrates, the best laid plans etc. can go terribly awry terribly fast… as when Aunt Kay was very nearly sucked into a monolithic, uncaring healthcare system. My wife made it down here barely in the nick of time, but we don’t want to cut it quite that close when her dad needs a nurse and an advocate.

Yes… there are deeply compassionate, caring, motivated and insightful practitioners scattered throughout the healthcare system. But the key word is “scattered.” You can’t count on it… or if you do, you’re taking a chance. Even if your family doc is a peach, you never know… when you need him/her most you might get an on-call doc instead, and there you are, stuck eating potluck… all your best laid plans gone for naught.

Being on the receiving end of healthcare is quite an eye opener after spending all those years on the providing end. It’s plumb scary! In Albuquerque it took me about 4 tries to find a PCP I liked. Then I asked him, “How old are you anyway? It isn’t going to do me any good to settle on a personal care physician if you die before I do.” He chuckled and said he was a little younger than me, so not to worry. I still wasn’t entirely convinced though… statistically, docs don’t tend to live all that long. But then we moved to Florida, so now I’m back to square one. I know there are good ones scattered out there… somewhere… the trick is to separate the wheat from the chaff.

But here is the salient point…
People in the healthcare business tend to look at themselves and their clients as ‘us’ and ‘them.’ Hospice personnel are no exception… and perhaps even more so. But that perspective is inappropriate… by virtue of it’s being incorrect. The dying are ‘us.’ You and I and everyone either of us knows is dying. It’s not ‘them’ who are dying and we are the wonderful people who care for ‘them’… it’s ‘us’ who are dying.

That is a thought that is a little unnerving at first… until you finally figure out what ‘dying’ actually is.

In actuality, dying is largely figuring out who we are and resolving our life issues and relationships.

All of which sounds pretty airy fairy… but it’s not… really.

Finn has been gracious enough to offer some pretty practical, down-to-earth examples of both- “learning who she is,” and “resolving her life-issues/relationships.” In other words- dying.

Part of the secret of “who we are” as human beings is revealed to us by dying people (us.) While physically dying we have the ability to transcend the limitations of the physical realm and see beyond it. We are dying all the time, but physical death accelerates that process to breath-taking speed and reveals some of the secrets behind it all.

My wife’s coming to be near her father is an example of dying consciously. He is not dying physically, although he is old and feeble. They have (as most parents and children do) “issues.” Her spending time with him now, resolving those issues, will make his physical death (when that time arrives) much easier. They are getting their work done ahead of time. They are, in that sense, happily and consciously dying… together… now.

When you begin to think about dying in these terms, everything changes. I have said many times that there are 2 perspectives of the world: 1- the perspective of the “living” and 2- the perspective of the dying… and the latter is far more sensible. When you begin to understand… to let it in… that you are dying as we speak… literally… then you are opening up to the perspective of the dying. And you will find that it makes more sense then the perspective of the so-called “living.”

In Finn’s story her father was dying… and so was she… and so was her sister… all dying together, consciously… learning who they really are and resolving their relationships.
Michael

“When the body sinks into death, the essense of man is revealed. Man is a knot, a web, a mesh into which relationships are tied. Only those relationships matter. The body is an old crock that nobody will miss. I have never known a man to think of himself when dying. Never.”
Antoine de Saint-Exupéry (1900–1944), French aviator, author. Flight to Arras, ch. 19 (1942).

[finn11707]

Again, Thank you for your well stated wisdom Michael. You have helped me see more clearly. I have always felt an added concern when a caregiver/spouse expresses that they feel they are dying too, in the process of being so close to their loved one's death. I have always responded by trying to help them understand their part is to live...honor and carry on the memory, as their loved one would want...blah blah...and the dying one's part is to now lead and teach us this part of life's journey. It is here I add poems to my visits, as they touch the soul so much better than I, and offer a ritual or celebration tone to carry through to the end. That heals my heart too, when I have grown quite close to patient and family. I see there is a greater wisdom in your words though. Understanding and helping others see too that we can only live on by 'dying' and "learn the secrets of who we are..." through the dying--participating in that journey of consciously dying; delve into ourselves, to find the truth and strength to carry on with living. That honors the journey so much more, for what it truly is (or could be) for all of us!

I once had the honor of journeying to his end with a much loved professor and his wife who was a minister. For some 20 years, he had spent each summer cooking on an Alaskan fishing boat. He knew how to face adventure! He did not choose THIS adventure and remained determined he would survive until the end. This was partly due to his determined nature and love of life, and partly due to the fact that he had received direction from MDs 3 different times over a 9 year period to 'go home, get things in order and prepare to die' as he had cancer mets to 3 different systems. His wife, because of her profession, gently engaged him in loving talks about the fact that he would 'need to go' and philosophically how to let go; but eventually found herself feeling as though she was "literally dying too". This feeling was so overwhelming for her that she employed a team of loving acquaintances to be present with him for many hours each day, engaging in literary discourse, performing his chosen "rehab exercises", while she returned to work. His dying dragged on until everyone involved was exhausted by his insistence that he was "getting better" and would "beat this", though his body showed blatantly otherwise. My visits became only reading of poetry, and checking all vital signs (per his insistence) each visit. We decided to create a celebratory atmosphere with flower garlands, candles, music and strewn pictures of all that he loved around him. He finally was ready to embrace the crossing and slipped away with his team gathered around. One caregiver had written a loving song of tribute to him and sang it softly as he was dying. I will never forget their journey.

These are some of my favorite poems that help and heal in our journey.

WHEN DEATH COMES by Mary Oliver

LOVE AFTER LOVE by Derek Walcott

THE JOURNEY by Mary Oliver

I AM NOT I by Juan Ramon Jimenez

THE SOUND By Kabir

SOME KISS WE WANT by Rumi

GIFT by R.S. Thomas

LET'S GO HOME by Rumi

WHO KNOWS WHAT'S GOING ON by Juan Ramon Jimenez

OCEANS By Juan Ramon Jimenez

AND, for all us Hospice workers:

I UNPETALLED YOU by Juan Ramon Jimenez

I unpetalled you like a rose
to see your soul, and I didn't see it.
But everything around
-horizons of land and of sea-,
everything out to the infinite,
was filled with a fragrance,
enormous and alive.












They heal

[req_read]

We are captives… or victims… of our own language.

“Sticks and stones can break my bones but words will never hurt me.”

WRONG!!!!!

We are captives… or victims… of our own language.

Poetry uses words in a very clever way… to create momentum that suddenly throws one outside of the limitations of language.

The word “death” is normally, in our social system and in our language, thought of as “cessation of life.” When I speak of “death” however, I do not speak of it in that context at all. There is the “death” of our body… which actually is an “end” point. Then there is the “death” of who we really are… consciousness… which has no “end” point.

So our language is inadequate. We use one word… “death”… to speak of entirely different concepts… concepts which are virtual opposites. And we get confused… quite naturally.

Small wonder then… when we listen to dying people talk… that THEY sound confused. The question is: Who is the more confused? Us or them?

We here of dying people who become increasingly convinced they are fine… will not “die”… while at the same time their physical dying process is accelerating. And we say they are “confused.”

But who is the more confused?

They are becoming increasingly aware that they will, in the normal definition of the term, NOT cease to exist. They are becoming increasingly aware that they are NOT bodies, but are in actuality, consciousness. So they say (and rightly so) that they are fine and will not die. And we think, “Oh yes you will.” And we think they are confused.

But who is the more confused?

Dying is a process that forces us to see who we really are… and it forces us to resolve our relationships (which is a huge part of who we really are.) Dying process forces us to see that we are not bodies… by taking our bodies away. And what is left?

What is left is: Who we really are; i.e. consciousness, relationships, thought patterns.

The so-called “living” (the not-yet-dying) think we are bodies and will someday cease to exist. Both of those suppositions are wrong.

The dying come to realize they are not bodies and will not cease to exist.

So who is the more confused?

Poetry uses words in a very clever way… to create momentum that suddenly throws one outside of the limitations of language… tosses us outside of our “box.” Poetry gives us the opportunity to think outside of our usual thinking patterns. It is kind of exhilarating really… to suddenly NOT be confined… not limited. And that is part of who we really are… unconfined, unlimited thought.

We are not bodies.

Poetry heals because it tosses us outside of our box… into who we really are… unconfined, unlimited thought.

Michael

“Every time a child says, “I don’t believe in fairies,” there is a fairy somewhere that falls down dead.”
J. M. Barrie (1860-1937), British playwright. Peter, in Peter Pan, act 1.

“We are born believing. A man bears beliefs as a tree bears apples.”
Ralph Waldo Emerson (1803–82), U.S. essayist, poet, philosopher. The Conduct of Life, “Worship” (1860).

[finn11707]

"Dying is a process that forces us to see who we really are… and it forces us to resolve our relationships (which is a huge part of who we really are.) Dying process forces us to see that we are not bodies… by taking our bodies away. And what is left?"

Truly! --so how difficult at the end for those who believe they badly screwed up their relationships. Is end of life confusion or 'focus on the beyond' avoidance? or is it a way to resolve failures and transition beyond? For the living, attempting to understand dying, returns us to a clearer understanding of what is important in life and relationships. I wonder if the dying arrive at this learning too.

"...lest we sift it down
into fractions and facts--
certainties---
and what the soul is, also
I believe I will never quite know.
Though I play at the edges of knowing,
truly I know
our part is not knowing,
but looking, touching, and loving..."

If only there were a hospice recipe to heal those who suffer profoundly at the end. I haven't found a way to not ache for them. (Perhaps, reflecting that I still have some work to do too.) Healing someone who is deeply suffering at the end is often difficult--even futile, so we put them into the hazy arms of Morphine or Haloperidol or Phenobarbital.

I arrived at a first visit to a man in a Board and Care facility. He lay dying, alone in his room. He was wild-eyed, attempting to raise up as I entered his room; whispering "help me" through wet respirations. I told him that his time near and that I would stay with him. I sang to him and held his hands in mine and he departed not more than 15 minutes later.


As I watched my father pull into the restless part of dying, where he remained for a month, I knew he was revisiting troubles of long ago. Dad was a story teller. He described himself as an 'alley rat' when he told stories about his life as a boy. I knew him as a devoutly christain man, so had difficulty believing his stories about the scrapes he got into. His father had been the 'town catch'. A charming, high functioning alcoholic who allowed only his family to become intimate with his demons. My dad 'took the punches' for his mom who left the marriage when dad was 13. She joined a fundamental religion, I am sure, in hopes of undoing the damage and re writing the rules for herself and her 4 teenagers. My dad joined the church with her, though his other siblings learned to cope like their dad. As a family, we felt fortunate when we visited our cousins and saw the chaos of alcohol in their lives. Still, dad's deep religious faith was 'between us', taking precedence over everything in our life. The day dad wakened from that restless, month-long journey, he looked out over the vista of my sister's back yard, where the late afternoon sun was painting everything golden, and said in amazement "...our garden is so beautiful!..." His suffering was over and his last 2 weeks of dying were peaceful.

I have worked with various theologians at end of life. Often, there seemed to be some worry holding back their crossing. I have always wondered if there was an underlying of crisis of faith. It seemed the best comfort was a prayer that '...God will take care of the rest now...' Concern about others or unfinished relationship issues has great power over the dying process.

Quite early in my hospice work, I cared for a woman who believed she could help her daughter 'straighten her life up' if she were present as she died. The problem was that when the daughter had come to visit 2 months before, all h--- broke loose. They argued over everything. The daughter left to return home across country, with the agreement that we would call her when mom began 'actively dying' and she would hop on a plane. I was called to the patient's bedside one morning by the son and husband who believed she was "dead or almost dead". In fact, she was ice cold and stiff, with long apnea periods. As the bed was quite soiled, the family urged me to not wait to clean her. I gently cleaned her and changed her bed while softly talking to her--saying goodbye. Then I learned a great lesson! I softly assured her that her daughter would be ok and she could leave without waiting for her. The words were no more out of my mouth than her eyes opened wide with a deep "oooh!" She lived for 3 more days in that lingering state. But her daughter was present when she died.

Last night as I was sleeping,
I dreamt--marvelous error!--
that I had a beehive
here inside my heart.
And the golden bees
were making white honeycombs
and sweet honey
from my old failures.
(by Machado)

I know Mary Oliver's words are 'living' perspective. Still the words comfort and challenge me to do the real work of life today, not tomorrow. "...I want to step through the door full of curiosity...When it is over, I want to say: all my life I was a bride married to amazement. I was the bridegroom, taking the world into my arms. When it is over, I don't want to wonder if I have made of my life something particular, and real. I don't want to find myself sighing and frightened, or full of argument. I don't want to end up simply having visited this world."
It is difficult to scrutinize yourself...to want to see faults clearly. We haven't learned enough about forgiving--ourself or others. Hospice work is tough, even without dragging along unfinished work of one's own!

Derek Walcott speaks to my heart in LOVE AFTER LOVE
The time will come
When with elation,you will greet yourself arriving
At your own door, in your own mirror,
And each will smile at the other's welcome,
And say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart.
Take down the love letters from the bookshelf,
The photographs, the desperate notes,
Peel your image from the mirror.
Sit. Feast on your life.

[req_read]

Finn…

Yes… some very good lines…

“I believe I will never quite know.
Though I play at the edges of knowing,” etc.

I think that one of the difficulties in understanding what the dying tell us has to do with conceptual cross-referencing.

For example, one of the most common utterances of the dying has to do with “going home.” Obviously there is “going to the house… literally,” and then there is “going to my heavenly home.” We sometimes get caught up in a literal statement while overlooking the conceptual implications. When conceptualizing we are inclined to put a thought… or concept… into familiar context… or into a well traveled thinking pattern… so the concept gets interpreted literally… by either the patient, the practitioner or both. And then of course there is the great difficulty of explaining non-physical realities in physical reality jargon… which, since we “live” in a physical reality is about all we have at our disposal.

However, if the practitioner begins to practice thinking outside of the physical reality box… to imagine a non-physical mode of “living” or being, then little clues begin to appear. What would it be like to not be physical? It seems, at first anyway, to be almost impossible to imagine. But there are clues… and practical ones at that. There are things that we accept on “faith” (or at least try to) but discover, upon closer examination, are really quite practical.

Take this forum for example. We are not really here… physically. What is here physically are the letters and words we type, which are merely symbols for ideas. What is here then are ideas… which are completely amorphous and in our usual way of thinking, are not really very “real.”

Because of my blindness and the fact that I do so much of my social interactions online… never “seeing” who I am dealing with… I usually have no idea of the age or race of those with whom I communicate. Age and race are irrelevant in a non-physical state. Most of the time I know the gender of my clients, but not always, and usually not the sexual preference… and that too is irrelevant.

Years ago I read a book that purported to describe what it is like after we die… in a non-physical state. One example given was that people of like interests and level of learning tended to clump together. I cannot help but notice the similarities with this forum.

When we look around at the technological advances in our society it seems obvious that we are trying to replicate (with technology) a world that gets around the limitations of the physical realm. We “live” in a physical world but really don’t like its limitations, so we do everything we can to short-circuit those limitations; e.g. with cars, airplanes, telephones, cell phones, etc, and now we are getting into some really startling communications advances what with the internet and satellites etc. A couple of days ago I was chit-chatting with someone in India and filling an instant order with someone in Australia. Contrast that with 1849 when it took 4 to 6 months to go from Kansas City to California. So in a thousand very clever ways we are hard at work trying to thwart the limitations of being physical… then claim we cannot conceive of not being physical.

Ironically enough, we bust our buttons trying to free ourselves of the limitations of being physical, when in reality we are all dying and will become non-physical a whole lot sooner than we care to think.

And yes… it is terribly hard to look at one’s self. The only thing harder is to not look at one’s self. What I mean by “harder” has to do with practical outcomes. The end results (or outcomes) likely to ensue from looking at one’s self are invariably better… more pleasant… than not looking at one’s self.

Then again, you can’t force anyone to do anything. Some people just like spitting into the wind… or at least they have been taught to do that and become habituated to that particular technique. But that does not mean we should conclude that, for them, spitting into the wind is a “good” way to clear ones’ throat. It is one way, that’s for sure… and it does get the throat cleared, true enough. But all things being relative, it is not an especially “good” way.

Michael

[finn11707]

I would like to further stretch this thread to ask for thoughts about what limits us in our work? Michael developed a practical, but rather topical subject of "managing symptoms for a good death" into a journey whereby we, the readers, could explore the concept of "conscious death"...then "living consciously" and working consciously!

I want to sincerely express my gratitude to Michael and to Leslie through the some 2 year history of this thread. Challenging us to make this journey of self discovery and thereby move to a more conscious way of supporting ourselves and others. It would surely benefit if this entire thread became required reading for hospice workers!

How can Hospices challenge and develop the team to work more consciously? I joined this thread recently, but noted that the first 6 months of its existence stimulated minimal response---a few points on which meds work better than others for which symptoms in end of life...There was some resistance, initially, to Michael's posts which lead toward a more psychospiritual evaluation. I don't think lack of response was a lack of relavance. Rather, field fatigue or demoralization which often surrounds this work when there is insufficient acknowledging, leading or supporting of the psychospiritual nature and greater meaning of our work. It is often as if hospice staff 'feel their way' into hospice work. Hospice conferences and retreats commonly focus on topics such as 'good symptom management' and helping patients and families to understand and prepare for the journey, rather than nurturing and healing its own workers.

Oceans by juan ramon jimenez

I have a feeling that my boat
has struck, down there in the depths,
against a great thing.
And nothing
happens! Nothing...Silence...Waves...

--Nothing happens? Or has everything happened,
and are we standing now, quietly, in the new life?

[req_read]

finn…

Well this does puzzle me… and has for a long time. Playing around the edges of knowing… of discovering… the meaning of life has always enthralled me. My pulse quickens, my ears perk up, all lassitude dissolves and the blood flow to my brain accelerates. But apparently I am not normal. Welcome to the club, but beware… it is a small one.

Which is ironic… ironic in the sense that I learned very early on that, as a general rule, people do not like to think about, discuss or spend any time at all focusing on death & dying… until they are dying… at which time they want all the answers immediately. And as soon as the dying one has passed on, their close friends and family revert very quickly back to the “don’t want to hear, think or talk about this any more” mode.

So freaks like me (who actually enjoy thinking and talking about it) receive a very peculiar response from the public. Most of the time we are ignored. People just wish we would shut up and go away… interspersed by brief periods (when someone is actually dying) by being treated like some sort of savior. But then the person dies and we go back to being treated like lepers.

In the last couple of months however I have come to some new conclusions regarding the trajectory of my work. My primary target of course has always been dying people and their families. That will remain the same, but my secondary focus has been on hospice nurses and nurse managers. I now realize that has been a mistake (this forum has been instrumental in teaching me that valuable lesson.) For a variety of reasons (many of which have been actively explored in this thread) it has become manifestly apparent that my arena of interest and the average hospice nurse’s arena of interest are simply not the same.

When someone with a similar arena of interest does happen along.. such as yourself finn… my response is predictable… perhaps automatic even. My pulse quickens, my ears perk up etc. I can’t help myself.

But it has occurred to me I might do better focusing on hospice volunteers. First, they do what they do by choice... for no financial gain or necessity. Perhaps most importantly, they are on no schedule. They have no CEO waving productivity stats in their faces. They can go out to see a pt/fam and stay all day if they choose. They can pick and choose who they spend time with… or not. They come from all walks of life, bring a very wide range of interests and areas of expertise, and are eager to learn.

As for the Jimenez poem…

Very poignant. Very true. Very often we do not realize… at the moment… when something profound has occurred in our life. It is only later, in retrospect, it dawns on us that something we have long considered to be inconsequential actually changed our life.

Michael