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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TO ERR IS HUMAN

I read a painfully honest account today of implicit bias, something we all have in common as human beings. A doctor shares openly about how she reacts to a family of a patient who is imminently dying, and the disservice she performs secondary to implicit bias. She explains implicit bias as something we do cognitively, on a subconscious level, associating stereotypes and judgments in ways that affect our attitudes and behaviors.

Last week I accompanied another nurse and we sat in the hospital with a 92 year old man who was explaining to us his willingness to go home with hospice, alongside his conveyed goal to live as long as he can and have good days. These two things are not contradictory. Yet the discussion seemed to evolve into a task of signing papers and having his wife make the decisions, after all he was very sick and perhaps he has minimal time left on this earth, so really addressing and understanding his expressed goal of living as long as possible seemed moot. Another lovely elderly man approaching 90 was hospitalized and underwent several procedures prior to going home. I, like others, have this immediate reaction— usually an unexposed opinion about overdoing things when the tired old body is beginning the rapid trajectory towards quitting all together.

I know I am not the only one who considers reaching the age of 90 a very long life; even arriving to one’s eighties as a fait accompli seems momentous. I have this inner dialogue about just accepting the fact that everyone dies, and perhaps an elderly person should reach this point of acquiescing to death without so much fanfare. So, my implicit bias must be recognized, scrutinized, and held in check when I am listening to a person’s life goals. How do they want their days to end, and what do they see in store? I want to be more aware of “my stuff”, simply lay out the options, be honest, and then really listen to how they answer the question. Fact: Life is precious. Fact: We will deal with the end of life in our own way.

Fact: We can’t avoid implicit bias. Our perceptions, our socializations, our expectations of a scenario and the people in it are unique to each of us, developing over our lifetimes, created by the many situations we have encountered. I heard myself say recently, “That’s just the way I am”…and realize what a cop-out that is! Sorry, Amy, no one is compelled to behave a certain way without a choice. Though it is easy to succumb to our preconceived ideas, and “do what we have always done”…we might pause to take some extra moments, listen a little deeper, and be present for those we claim to be providing our time and attention to. We might learn to see and be another way.

The doctor’s story can be read at:
https://palliativeinpractice.org/palliative-pulse/palliative-pulse-june-2017/implicit-bias-and-palliative-care-part-1/?utm_source=Implicit+Bias++-++Friday&utm_campaign=PiP-Implicit+Bias+-+Friday&utm_medium=email

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NEITHER EXPERT NOR NOVICE

Like other families, my first real glimpse of home hospice care was when the team came to help my mom care for my dad the last 3 months of his life. I was not new to watching the dying process, though. At the time, I was a fledgling nurse working in critical care, seeing first hand the fierce effort to prevent the occurrence of death. Dad’s terminal 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, which was treated with a number of radiation treatments that took the stuffing right out of him… until dad said “I’m done”. I spent a couple days each week to help care for dad, often overlapping with the hospice crew who would come and go, giving mom a much needed break. Though I knew death as the enemy in the hospital world, I had also been given opportunities to watch many families deliver a loving presence even if they were not the ones to do the turning, bathing and administration of medications.  I had witnessed their presence, versus the many drugs we trialled, as the only antidote for an anxious and confused patient.  I learned to value this presence—perhaps more than all the technology and medical treatment we could offer in the hospital—this gift of a loving family that soothed a suffering soul.  The medicalisation of dying, so prevalent in intensive care, was not the only way for dying to occur. Hospice was delivering care to dying patients in a different way.
Over a decade following dad’s death, now as a hospice nurse, I was travelling that 1-5 corridor again, this time to help care for my mother.  I’ve sat in many hospice team meetings, during times when the staff shudders and soft groans are audible, while discussing the patient who had “family issues”—surrounding the son or daughter who was a “medical professional” and being “difficult for staff to manage”. Now that issue was ME!
I probably drove mom’s hospice nurse crazy (though she never told me so). I didn’t hesitate to ask for things, and I wanted to know what else could be done for symptoms that were problematic. We all have our own perceptions and biases, which create assumptions that can interfere with new ways of doing things— but I think both mom’s nurse and myself learned together from a number of opportunities, and ultimately mom benefited.
I still hear hospice staff say, “she should just be the daughter, and let us be the caregivers” and I cringe, remembering well what I felt as both a daughter and a nurse who had end of life expertise, caring for my mother. One word sums it up: Advocacy. I knew how to do this for mom. Being a medical professional does not mean you are an expert in everything medical, and being a family member does not mean you have little to offer in terms of medical opinion. Regardless of what is understood, or lacking in experience—whether clever and knowledgeable, or barely confident and a mere novice…a family member is an advocate. The word Advocacy means to “summon, call to one’s aid…the act of supporting someone to make their voice heard”. This is what families can do for their loved ones.
It is what hospice care is all about.

 

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A MOTHER’S DAY GIFT

Only yesterday did I read the story of the woman who is given credit for creating Mother’s Day. It’s a rather sad story, this woman who was never a mother herself, but loved her own mother and recognized that mothers should be honored. According to the chronicle told, she spent her life and her livelihood trying to protect the fact that it was she who actually was the founder and not others who tried to claim it. When I read this, I was dismayed that history seems to remember this glaring need for her to ensure she received the credit. It may or may not be what is actually true, she isn’t here to tell the tale herself. Evidence says she had strong feelings about the holiday not being celebrated, like so many holidays, by the outward show of expensive gifts—another holiday to commercialize— but wanted it to be a true awareness of what mothers do for us, and the world. She commemorated mothers as having been the world’s peace makers.

I have marvelled many times over the years about all the brave mothers I have known. Those whose later years were marred by losing a daughter or a son, and being left with only memories of the love that filled their heart as they had watched their child grow into adulthood. And the other mothers who held their babies and young children, providing the loving hands that cared so beautifully as these young ones died too soon. I always remember my own mother, on this manufactured day, she who was not perfect—no mother is— but loved so perfectly. I think of all the ways she mothered me over the years, both near and afar, my inner awareness of her love and prayers going with me wherever life’s path took me.

I had the joy of sharing my mother’s love for 50 years. I thought this morning about another woman; some would say she actually didn’t get to be a mother. I knew her some years ago. She had birthed a child that was lifeless, but oh how she had loved this infant. She knew before his birth that he would not survive long, but planned for the hours or perhaps days, or miraculously more than that, whatever she was given, and how she would hold him and comfort him. It was not to be, this wish of hers, and a week before his actual due date his little heart stopped beating. I remember well the breathless swaddled bundle, held with tenderness by both of his parents, and the wee urn that his ashes were later placed in.

It doesn’t seem to matter, the length of time that a mother’s heart is spent with a child. Mothers don’t stop loving, because their child is gone. On this mother’s day, like Anne Jarvis, I know from experience what every mother has given and received— The True Gift— a mother’s love.

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HEART TO HEART

I was reading an article about the ethical dilemmas surrounding persons in a minimally conscious state, which is not the same as a “persistent vegetative state”. Minimally conscious state is sometimes a grey area in medicine, and recovery may or may not be a realistic outcome. I had the experience caring for patients in this limbo state in numerous instances while I was still a critical care nurse. It sometimes felt as though we’d all been transported to a movie set’s surreal scene: a pale, mostly silent patient connected to miles of plastic tubing and their beleaguered families with their exhausted and bewildered faces looming above the hospital beds, looking down on their loved one for some shred of hope amid the pumps and machines whirring in the room.
It was during one of these scenarios that I took care of an elderly woman, Jane, who had collapsed in the 24 hours prior to the intensive care admission. Her heart for many years had been slowly pumping less and less effectively and had finally reached its end point. She had been revived by the medics that arrived at her home after her daughter had called 911, and I had been her nurse for the three days since then, while she briefly regained consciousness to discover herself on a ventilator. She wrote notes to her loving spouse that she was really tired, and clearly indicated life was too cumbersome to continue. “It’s time”, and she would shake her head when he would talk about her getting better and coming home. Her eyes pleaded with her family, while they gently held her hands and told her how much she was loved. Long before a push for public awareness and many people having signed their name on a POLST form indicating whether they wanted resuscitation or not, Jane was clearly writing her wishes on note pads, in simple words: “No more”.
Her third day came and she did not easily waken. The family sat with her throughout the morning, believing she knew they were there at her side. They had initiated the difficult conversation with her doctor the day before, when he made his rounds, clearly advocating for Jane, stating she had “never wanted to be kept alive on machines” and though they had hoped for a different outcome, they knew she was done. The recommendation had been to “see how things looked in another couple of days”. This day they were adamant.
It’s one of the hardest conversations for families—the removal of life support. Yet this family had listened well over the years while Jane’s physical abilities had progressively slowed, and the last thing any of them desired was prolonging this final phase. She had wanted to “just die in my chair some day”. Though things had not happened the way she had hoped, her family were the ones now that had insisted on the discussion, and honored her wishes.
The order was written, the medications were adjusted, and the endotracheal tube was pulled, the machine pushed out of the way, into the corner of the room. Jane didn’t die immediately; her family sat sadly at her side and quietly recounted favorite stories, softly sang songs, or just touched her hand. Though she didn’t answer, she seemed to be listening. It was one of the first families I had ever observed who clearly spoke on behalf of their loved one; who had adamantly insisted on the patient’s wishes being followed; and who firmly advocated for a peaceful and natural death, even in the midst of all our intensive care technology and the “always something more” that could be offered.
Jane died quietly later that night. Her family’s gift to me: insight into some of the other ways to support and love your family member, by allowing a natural death. She didn’t die at home on hospice, but they provided the next best scenario, a vigil at her bedside filled with loving memories and sweet sounds.
I think we have made considerable progress since my early nursing career. More families are talking ahead of time about their hopes for how they want life to end, what they consider quality of life, and how they can support each other as illness and disease progress. These may be difficult conversations to begin, but so worthwhile: How do you picture the end of your life, what’s most important to you? (see The conversation project at http://theconversationproject.org)

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