HOSPICE ROLES

father-1837457_640I will be happy if I never hear or read of another palliative or hospice-trained person saying something like, “she should just be the wife (or whatever the role is) and let us be the caregivers”.  “Should’s” are often not a helpful stance in anyone’s end-of-life journey.

Like others, my first glimpse of hospice care was the team who came to help my mom care for my dad the last 3 months of his life.  At the time, I was a newer nurse working in critical care, and lived a couple hours away from my folks.  I had watched the dying process many times as we valiantly attempted to stave off death from our critically ill patients. But seeing patients dying in the hospital was a very different experience.

Dad’s diagnosis of two separate cancers, both colon and lung, had initially been treated with a brief run of chemotherapy, then the lung cancer was complicated by brain metastasis, followed by a few radiation treatments that took the stuffing right out of him.  I remember when dad said he was done.  He wanted to stay out of the hospital, and mom called in hospice.

I came down every week to help care for dad.  The hospice crew would come and go, giving mom a much needed break and also help everyone understand what was happening.  Though I knew death as the enemy in the hospital world, I had also had opportunities to watch many families provide a loving presence even if they were not the ones providing the physical care.  Sometimes, only that presence was the antidote for an anxious and confused patient.  I learned to value this—perhaps more than all the technology we could offer in the hospital.  Eventually, I sought hospice nursing as a means of providing a different way to approaching caring for the dying.

A decade after dad’s death, as a hospice nurse, I was traveling that 1-5 corridor again, this time to help care for my mother.  As both a nurse and a daughter, I learned another way to see the family, the care, and the hospice team.  I recognized the value of each person’s experience and also how the different roles we all juggled could add depth to the shared experience.  I could understand a daughter caring for her mom at home, because I had experienced that.  I could know the trepidation of a nurse who was also the daughter caring for her father while he lay dying, because I had experienced that, too.  I knew what it was to feel helpless, both as a daughter and as a nurse.  I understood, from my experience, how hard it is to separate these different roles that make up who we are.  Nor is it necessary.  I believe I can be a daughter, a nurse, an advocate, and a caregiver, without the need to separate these roles into tidily bound boxes.

Families do end of life care in all kinds of ways, from all sorts of perspectives.  Though I have participated in many hundreds of other’s journeys, I know I am not an expert in how things should go.  I’m not sure “should” is part of the vocabulary.  There really is no right way.  It is simply a journey that all of us will make.  Most of us hope when it is our own that it is upheld with kindness, imbued with dignity and encircled with love.

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ONE WILD AND PRECIOUS LIFE

diamond-158431_640What will you do with your one wild and precious life?  Mary Oliver.

I was thinking about legacy, and how the world shapes us.  There have been so many lives shared with me over the years: some people I have known only briefly, others for longer times.  I am always cognizant of the diverse and sometimes terrible ways their legacies were made.  So often, what was truly harsh in this life became refined before their lives were done (like the heat and pressure that creates the beauty in diamonds).

I have some vivid mental vignettes of their shared experiences that shaped their lives: The purplish stamped numbers on an old woman’s forearm, and the losses she suffered in this life that moulded her into a person who quietly survived— teaching her children to never let life beat them down;  The serene age-lined face of a man whose students hung on the cherished words he spoke, himself saved from an abusive and brutal life through his dedication to inspiring literature— still quoting and teaching wisdom as he left life behind;  The gentlest man who had overcome his own demons and continued to bring support and light to others in the clutches of addiction— remaining a mentor until his last breath; The pale faced little girl whose inherent limitations in this physical life created total dependency—and whose happy demeanour brought laughter and joy to her family throughout her short lifespan; The man whose livelihood and family had been torn apart during a government-led internment— who spent the remainder of his days lovingly growing plants and enhancing lives around him with beauty.

For many, these stories will go unnoticed in the world, their accomplishments will not be heralded after they are gone and their obituaries forgotten… though a few will remember.  When all things are taken into account, it may seem insignificant.  It may seem as though they just happened to have been in a certain place, and the experience just befell them.  It may seem as though none of it really mattered in the end, since all of us will only be remembered for a time.  Yet they made a difference in their small corner of the globe.  The events in their life shaped them, and they in fact did something wonderful with their wild and precious life.

I’m taking a moment today to remember and thank each of them; it was the sharing of their lives, their legacies, that made their precious life even more precious to me.

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WHY HOSPICE, WHY NOW?

vintage-1354642_640-2There is a question suggested for hospice staff to consider when they talk with people about hospice services.  “Why hospice, why now?”  Ask yourself, what makes this moment in time the reason someone might decide on hospice; what about this time is the right time; how might this person’s goals for their life, and death, be served best now?

It’s a question we thought about, we two nurses, as we gingerly stepped through an obstacle course of a yard, ignoring the no trespassing signs, and entered a particular place, at a particular time, to speak with an emaciated “houseless” man about his goals for care.

I counted 12 people who came and went during our brief time there.  We sat in a 5 foot  x 5 foot space, our knees nearly touching, in the middle of a ramshackle, dilapidated hoarding home open to local folks who had no home.  We talked together, amidst large black garbage bags of trash and rusted tools and paint cans and stacks of plastic containers and obsolete papers.

His story was like most of the others’ who lived in this place, where the battle with drugs and alcohol had direct implications for the loss of family, job, and sense of belonging.  Except strangely he had found a kind of belonging. His friend was sitting next to him, who cared for him and hoped that the last part of his life could be lived the way he wanted.

As we sat, our potential patient talked of his picture, what death might look like at the end, and how he visualised his ability to “call the shots” continuing for a lot longer.  We listened, as he explained he wasn’t quite “ready for hospice”.

We two nurses observed his yellow coloring, his enlarged belly, his swollen legs, and his waning strength, and we knew it might indeed be time, much sooner than he realised.  But the question, “Why hospice?” doesn’t always have a quick and ready answer.  The why now? part requires someone’s acceptance of approaching the later part of a disease process; a realisation that this short life is nearly done; their desire to finalise plans for death without a lot of medical intervention; and the desire to have hospice help.

He let us know that he wasn’t in that space yet.  Maybe he would arrive there later. Maybe not.  We told him we could be available when and if he decided that hospice now was what he wanted.  As we headed out the door with our hospice agenda unfulfilled, his friend of many years assured us he would be there to make sure this man didn’t die alone.

Many of us who work in end of life care might share a particular and rather defined view of what constitutes a “good death”.  But the plan and how each person arrives there is never as straightforward or simple as answering that question, “Why hospice, why now?” 

It might not be hospice time just now.  Yet the question, and the time that is right for each person… “a time to every purpose… a time to be born and a time to die” (Ecc. 3: 1-2)….will end up answered, one way or another.

I always hope for each and every person I encounter, that it will be in their own way, in their own time.

.

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SIBLINGS

girlsv3J. can no longer easily get out of her recliner, and her adult sisters have arrived to help her manage these last days so she can remain in her home.  She tells us at our nursing visit:  “When they (the two sisters) told me they were coming up to be with me, I thought I had big plans and places to go, and we three needed to have things to do together. But I can’t seem to manage the beach trip, and it is so much effort to get out of the house now.”

She gently sighs.

J. continues, “We used to be so hurried when we got together, what with the kids and so much to do.  We never had enough time to visit.  Then it hit me last night, while we just sat around watching TV, it was quiet and peaceful and just comfortable, and I thought, ‘This is so great, to just sit and enjoy each other, this is quality of life!’  We haven’t had quiet time together like this since growing up together as siblings.”

Her mother is here as well.  The three women scurry about, fussing over her, trying to tempt her waning appetite with special dishes, propping pillows, helping her to the bathroom.  She suddenly decides that she really wants to eat a chicken leg, now that the nausea is a little better managed.  The two sisters leave mom and J. dozing in the matching living room recliners and run off to do errands.  Written on their to-do list: Finding a fried chicken leg.

J. is satisfied with these simple pleasures…content with these dwindling days together.

I’ve spent a few days with my little sister this week.  We get in thousands of words a day.  We hang together, in quiet moments reading.  We reminisce.  We laugh and cry.  We sing.  We shop.  We just enjoy looking out the windows.  We do nothing momentous.  We accomplish nothing remarkable.

I take a minute to remember J., and how right she was… I think to myself, how uncomplicated life becomes when all the busyness is whittled down to what really matters—the simple pleasure of just being together.

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BEHIND THE WORDS

Words can relay many things, but they only share a part of the message.  Even when words aren’t understood, or are unspoken, we can still communicate.  I recently made a visit to a patient who lay in his bed, able to whisper soft responses during our discussion of his health and care needs.  His spouse was sitting nearby, quietly waiting.  At this first meeting, the patient was able to tell me what was on his mind, but his wife had suffered a stroke and could only repeat the same word—just one word— over and over, for everything in her world.  The inflection might be different, the number of times she spoke the word might be more or less, but the word was the same.  It was the entirety of her spoken vocabulary.

This makes me think of Barbara, a patient of mine many years ago, whose frustration level with aphasia had created “behavior issues” for her with the staff at the facility where she was a resident.  As people hurried about her, it was rare that she had a say in what was done to her, or the timing of events in her daily life.  Something as simple as “I don’t want to wake up yet” was unable to be spoken, and she would lash out when staff were insistent that she get up for breakfast.  Over the time I knew her, she and I found ways to understand each other.  It was often guessing on my part, gesticulating and repeating on her part, but I learned to care deeply about communicating with her, to be sure her needs were met and let her know that she was valued.  She could have a say, even though she wasn’t able to speak it.  Some of us would listen.  Some of us  would try our best to understand.  Some of us would advocate for her.

I realized as I left this visit the other day, that Barbara had taught me that lesson all those years ago: Understanding doesn’t always need words.  It wasn’t hard to recognize that this wife, sitting at her husband’s bedside, was worried about him.  I had said a few simple words to her with some reassurance that he was doing well today, and her eyes lit up with pleasure.  She could nod her head to answer me, and we could look at each other, hold a hand, and share compassion and interest without words being spoken.  It is the human language of touch, of seeing and understanding that can be found when we take some time to really listen to each other.

Thank you again, Barbara, for showing me how it is done.

“The message behind the words is the voice of the heart”  Rumi

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A NEW YEAR

Perhaps because I heard a blessing, perhaps because I remembered a tune, perhaps because some I loved are gone, and perhaps because another year has gone by…I send this wish to you:

May You Always…

walk in sunshine

Slumber warm when night winds blow

May you always live with laughter 

For a smile becomes you so

May good fortune find your doorway

May the bluebird sing your song

May no trouble travel your way

May no worry stay too long

May your heartaches be forgotten

May no tears be spilled

May old acquaintance be remembered

And your cup of kindness filled

And may you always be a dreamer

May your wildest dream come true

May you find someone to love

As much as I love you

(by Larry Markes and Dick Charles)

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WHO’S SORRY NOW

i love youBullies might be sorry some day.
Who doesn’t have a story about being bullied? I remember being in grade school when there was a bigger girl who always lurked on the sidewalk with a couple of her friends. The three of them would call out and jeer at us smaller girls on our way to school. We used to say, “sticks and stones will break our bones, but names will never hurt us”. Now I know that name calling and blaming is hurtful, though.

My mother used to advise her young sometimes quarrelsome daughters, “be careful what you say, you can’t take words back”. There is great wisdom in that. As children we were taught that words should be chosen wisely; speaking truth and being kind. Words can wound, and bullies often use words to do so.

I have witnessed bullying as someone lay dying in a number of ways:

An elderly woman whose lifelong friend wrote words in a letter, questioning the righteousness of the dying woman’s life and creating both fear and confusion for her in her final days.
A son, whose Buddhist father lay dying, (now no longer able to refuse the priest coming to speak words over him), summoned the priest—perhaps to soothe his own need— giving little respect to his father’s wishes.
A final gesture of condemnation delivered, when an adult daughter sat at her dying father’s bedside, in his final days, and delivered words of blame and guilt for “not being there for her”.

Our words can speak encouragement and love. Our words can hurt and condemn.
A wise person* reminded us to say just a few things to the dying (perhaps for the living, too):
Please forgive me.
I forgive you.
Thank you.
I love you.
A lesson to learn: Choose our words carefully. We can’t take them back.
(*Ira Byock, The Four Things That Matter Most)

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THE ALIEN

the screamWe should never become immune to surprise. Too many things can stop us midstream and make us think about the novelty of our experiences. Every person who has been touched by the loss of someone they love has their own story of what it was like to be the carer of a dying loved one. These are unique stories (though often with common themes) and surprises should be expected.

The movie “Alien”, was a topic at last night’s dinner: That strange science fiction tale where the captain of the space ship is ultimately the lone surviver fighting an alien. The first hospice I ever worked for, and the movie “Alien”, came into existence in the same year, 1979. As I sat thinking about that coincidence, I naturally thought about one person’s story.

Jane was a wonderful daughter, who came from another state to move in with her dying mother. The home was in a serene waterfront setting, with waves that could be heard gently lapping along the shore and birdsong awakening sleepers early in the morning sunrise. But inside the home was another story. The final two weeks, Jane slept in the big bed next to her mother. Deborah suffered progressive terminal agitation as she was dying, at one point described by Jane: “Like she’s being possessed by an alien”. While Deborah was awake, both Jane and I could see the fear and confusion in her eyes that no medication could fully extinguish. When she slept there were brief interludes of what to us appeared to be fleeting expressions of peaceful repose.

As the days marched on, Jane relayed to me how exhausted they both were, and at one point during the night, having given medication which only seemed to allow brief relief, Jane stood in front of the bathroom mirror and enacted the final scene from “Alien”, silently screaming at the reflection “Die, Bitch, die”.

You, my reader, might be both surprised and appalled at such a story. Yet it provided Jane— the daughter who was so full of love and tenderness for her mother— a hilarious and comic-relief moment, both in those reflections during the night and as she told me about it the next day, saying she was certain I would understand even though it sounded “pretty monstrous”. She needed a little hysterical humour in the middle of those dark hours, as mom tenuously hung on day after day and night after night in the midst of dying… which had become so protracted.

There are times as a caregiver of the dying, as much as these dear ones are loved and will be terrifically missed, that a person feels so ready “to be done”. I have reminded many family members of this, while wanting the end to move quickly, and be over, then having an overpowering sense of relief when it finally occurs. Yes, relief. This is “normal” to feel at at the very end of someone’s life here. As much as I hate the word, “normal”, this sense of wanting to hasten the final act of dying might be described as “normal”— even though it may shock us all a little. Some of the hardest days of caring for a loved one are those last ones, that seem to stretch out forever, and most people feel helpless watching a person’s suffering go on and on. So don’t be too surprised, if you find yourself having a similar story to tell, accompanied by a profound sense of relief when the battle is over.

 

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THE BIG THINGS AND LITTLE THINGS

The other day, through a series of frightening one-lane roads with lorries taking up the entirety of them, I found myself in the pastural beauty of Beatrix Potter land— in the Lake District of North West England. Amid young calves running down hillsides, lambs prancing in the meadow, yes, even rabbits hurrying across the road, a message written on a wall quoted Beatrix:  “Enjoy the little things in life, for one day you will look back and find they were the big things”.

There were so many things, in this one day, that I was enjoying. Starting with drizzly rain punctuated with sun breaks, being able to walk along woodland paths and then finding an old castle ruin around the corner. In fact, these were not the usual things of my daily life, and I didn’t consider any of them small things. I don’t usually begin the day with a piece of toast and lemon curd. (Though I decided I might have to start).

This week, we’d had many opportunities for adventures. Like finding leftover coins in the pocket of an old jacket purchased from a hidden attic store. Then meeting someone new while out walking, admiring their 300 year old home, and finding out they will have to move from this place they love to care for their ailing mother.  We took a little time to commiserate about the difficulties of caregiving, and the gifts that are gained, and the things that are lost. She commented, “You were meant to walk by here”.  And all the people sitting in the ancient stone neighborhood cafe, captivated in the smallish moments of a midday meal; visiting with each other while savoring sandwiches, biscuits and chocolate in various forms— these little things were being fully enjoyed.

Yet it would be naive and foolish to think that we have only these special moments; there are sad and painful moments— all a part of the little things that grow into the “big things”. Perhaps this is what makes our day to day life meaningful. I know along with unhappy moments, the mundane and monotonous also impacts our day— and not every day holds such a variety of experiences, nor are they lovely ones. For some, even getting out of the home is more than can be expected in a day. I remember my patient, Gary, no longer able to get out of his bed, experiencing desolation in the tedious hours of each day stretching out endlessly. Still, he found a way to enjoy even those days. He took paper and drew pictures and names of people he knew, while he remembered past times together, thought and prayed for them, and hung the papers on the walls of his bedroom. When he died, most of the room was wall-papered in Gary’s mindfulness.
I understand that life presents us with the insurmountable “big things” that can easily overshadow the small things. And one might want to scream about the big things, yearn for the simplicity of the small things, and perhaps miss Beatrix’s point. It is indeed these moments gathered together that make up the day, and each new day is in reality a big thing.


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THE AWE OF TODAY

I spent a morning in anticipation, along with many others, corona finalwatching the moon cover the sun, until only a bright ring of light was left in the sky, and stars twinkled in the middle of a misty day along the coast. There was a cheer that could be heard throughout the town, as we awestruck observers shared a moment of utter beauty. For some of us, it was a chance to see something that came and went just this once in our lifetime. Check this off our bucket list!

A friend who is dying shared with me that she didn’t really have a bucket lists of things waiting to be done, but she was awaiting whatever experiences were to be had each day, knowing every day is another gift, especially realizing her days are dwindling in this life. There are lessons still to learn. There is love still to share. Her new day is another momentous happening— even without an eclipse to be in awe over.

It’s easy, amid our busyness, to forget that each day has this opportunity right now to experience life. We share this as humans, beginning a new day with new opportunity. There have been other eclipses. There will be again, though not for myself or my friend.
We say that “history repeats itself”: Oh, that we would learn the lessons!
This same week of eclipse hysteria, most of our news broadcasted reports of hatred and bigotry, those age old forces creating wars and human suffering, as history was indeed repeated. It would be nice to forget; but unfortunately reoccurrences serve to remind us again that some human beings awaken and their day is spent hating other people because they are different, making them the scapegoats for everything that is wrong in our world—those who both in history and present day are choosing to destroy peace and life for many. This, too, is a source of awe.

As I experienced a total solar eclipse, I wondered at the fact that the moon and the stars and the sun are the same celestial bodies that humans watched thousands of years before me— and that humans still exist on this earth (though we’ve tried hard to destroy each other).
Today begins a new day, and I am mulling over words that someone else wrote long ago:

Lord, make me an instrument of your peace.
Where there is hatred, let me bring love.
Where there is offense, let me bring pardon.
Where there is discord, let me bring union.
Where there is error, let me bring truth.
Where there is doubt, let me bring faith.
Where there is despair, let me bring hope.
Where there is darkness, let me bring your light.
Where there is sadness, let me bring joy.
O Master, let me not seek as much
to be consoled as to console,
to be understood as to understand,
to be loved as to love,
for it is in giving that one receives,
it is in self-forgetting that one finds,
it is in pardoning that one is pardoned,
it is in dying that one is raised to eternal life.

(known as the Peace Prayer or “Prayer of Saint Francis”, often associated with Saint Francis of Assisi)

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