Expressions 6 19 2013
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Transcript of Expressions 6 19 2013
Page | 2
The Person in the Picture
by
Colette Greer Daniel
As I gaze into your face,
I see you in another place.
Unresponsive, vacant eyes,
You’re the person in the picture in disguise.
The smile, the pose are a visual delight.
These are not the cues I see tonight.
The person in the picture looks loving and giving,
Now only a warm body exists for the living.
How grievous and sad that it comes down to this.
To be not a death, but a surviving “near miss”.
The person in the picture had life and had voice.
A surrogate now is the one with the choice.
.
Experiencing life was all that was needed.
Preparation for death had never been heeded.
The person in the picture was steadfast and true.
An intangible spirit that we cannot pursue.
Patiently watching the final premier,
Expectantly waiting for death to appear.
The person in the picture is beauty sublime.
A minute of life has been frozen in time.
Page | 3
Even Now
By- Patricia DeGaetani, MEd, BSN, RN
Still haunted by your aloneness
Wondering why out of hundreds
Yours is the case that lingers
Maybe it was what I expected--
Fierce independence and resistance,
Hostility and rejection of the care from a stranger
Distrust for anything and everything hospice
But in your apparent decline,
You welcomed me into your space
Then I saw,
I knew--
This was going to be different
Countless times, at the end of the day,
I've left so many patients
In the care of others
But not this time--
This was not your way...
Slowly, eventually, I came to understand
It is the dying process
For one so stoic and alone
That I cannot accept
Yet must somehow
Learn to respect and why,
Even now, yours is the case that lingers
Page | 4
The Gift
By- Patricia DeGaetani, MEd, BSN, RN
They ask, "How can you work in hospice?"
I say, "How can you not?"
Facing inevitable death, impending death,
We care for those at the final stage of life
Too often blinded to or ignorant of
The path we will all someday walk
If nothing else
But a not-so-subtle reminder
To cherish the moments we do still have
And live each day to the fullest
How can you work in hospice?
For the gift
Of compassionate living it bestows.
Page | 5
The Quilt of Caring
By
Donna Taranto
Palliative Care is a treasured quilt
Encircling body, mind & soul
It blankets the patient completely
To achieve patient & family goals
Doctors appliqué their expertise
When serious illness starts
Social workers piece solutions
To questions with many parts
Pain & Symptom Management
Border a patients’ stay
Add Pharmacy’s touch inside each stitch
For relief that doesn’t fray
The Nutritionist feeds the patient
Like the sewing machine needs its thread
Community Quilters and Spa 85
Are some ways the needle is fed
Pastoral Care’s faithful backing
Warms the body and the soul
Nursing provides the strongest thread
Piecing care in ways untold
Physical Therapists offer movement
Like fabrics to give it drape
Hospice & Nursing Home specialists
Added within to give it shape
Homecare embellishes the quilt top
‘Cause there’s no place quite like home
Care Management creates a template
So no patient will suffer alone
A quilt of caring & humanity
Using specialists of many forms
It encircles each patient it touches
Providing holistic healing that warms.
Page | 6
Palliative Care By Donna Taranto
A piece of yourselves
You give to each
There’s no one too sick
Or out of your reach
You give up your heart
Sometimes your soul
It’s never enough
When healings’ your goal
If healing the patient
Cannot be done
You prepare a soul
For its flight to the sun
With caring hands
And a sincere smile
You take pain away
With dignity and style
A parting haircut
One last favorite drink
Or a last look at nature
You don’t even blink
You gather their family
For one last kiss
A final sweet memory
One last wish
When the butterfly takes off
And flies to the sky
The family is cared for
To help say goodbye
Palliative Care Services
Like the sweetest dove
With comfort and caring
It surrounds all with love.
Page | 7
A Heart With Warm Hugs
When I grow up, that is ultimately what I want to be,
A Heart with warm hugs.
As a youth I wanted to wipe out all suffering in the world.
To bring joy and laughter to each man, woman, boy and girl.
I went to college and got my nursing degree;
cause I desire to be,
a heart with warm hugs.
A heart with warm hugs expresses compassion, oneness, no barrier.
It brings a moment of peace, warmth, healing, smiles, positive energy, oh sweet love.
A heart with warm hugs, reinforces and strengthens the chain of unity,
peace, understanding, good energy around the world.
That is why I entered nursing;
to touch, to heal, pour the energy of love into each hurting body, heart and mind.
I admired the way people of different cultures, race and religions appreciated the compassion, respect and touch
of love that my mother shared with all her patients.
Then the ultimate place that others thought I am crazy to want to be,
Is in hospice which found me.
Where my heart with warm hugs extends to those in most need of the energy of love, moments of feeling at
peace, oneness with all life energy.
To further be able to extend my heart with warm hugs to their family and friends.
To let them feel this is from no pretense.
The spectacular thing is how good it also makes me feel,
And guess what,
It's FREE!
Andrea Smith-Blackwood RN, BSN
Hospice of New York
516 444 6023
Page | 8
Angel
The 40 year old hospice patient, Mr. M, sits in a reclining wheelchair listening to the TV.
Alone in his nursing home room he can only hold his head up for a short period of time to see the
picture on the screen, the rest of his body is paralyzed, except for a slight movement of his arms.
Unable to speak, he lives inside his brain with thoughts to be heard by only God or himself. His
mind is fully lucid. He communicates with other people by moving his head for “yes” and “no”
answers. There is never a smile on his face or laughter in his expression. He has been in hospice for
several months. He stares for hours at the ceiling and the floor in his room listening to the TV, or
the people talking in the hall. This is his life.
The hospice aide, Christine, arrives to feed him lunch. The highlight of his day comes from
the pleasure of tasting food, the gratification of filling an empty stomach. She not only feeds him, she
brings a connection to another person as she talks to him with kindness. Each spoonful of blended
pureed food she carefully places in his mouth. With difficulty swallowing, he moves his chin to his
chest and then his head sways backwards; this to insure the food goes down the right opening. He
does this repeatedly with each bite. Too many times the food has gone into his lungs; his ability to
swallow is dying like the rest of his body. He has made the decision to let himself die when it goes
into his lungs the next time, and not to return to the hospital or receive antibiotics for the treatment
of aspiration pneumonia. His longevity is at risk with each spoonful of nourishment, so she takes the
time to feed him slowly.
Christine tells him stories while she feeds him, stories of the Redskin football team, the
programs on TV, and any of his favorite topics. It takes a special person to carry on a conversation
with someone who cannot speak back. She comes to him with so much compassion in her heart.
Page | 9
When the feeding is done she asks him, “Would you like to go outside Mr. M?”
His head slowly moves up and down to answer “Yes.”
Christine’s only responsibility is to feed him. She has many other people to care for on this
day, but she chooses giving him joy as her number one priority, since his days in this world are
limited. She wheels him outside, sacrificing her own break time. She is expressing the giving of love,
like a mother would do for a son, and adding this human component to her hospice work.
She pushes his wheelchair to the elevator and out the front door. He inhales the freshness of
nature. It is exhilarating compared to the enclosed air of the nursing home, with its occasional odor
of feces and urine. His eyes fill with delight at the sight of the green grass, the squirrels running
about, the summer leaves on the trees, and the warmth of the sun on his face. Christine is like an
angel sent to him, as she continues to talk about the sound of the cicadas and other things in nature.
This simple 20 minute walk, which a healthy person would take for granted, is like a child going to a
playground for this paralyzed man who reclines in his wheelchair or lies in his bed 24 hours a day.
They return to his room with the TV playing an episode of the comedy “Home
Improvement”. An extremely funny scene occurs that makes Christine laugh out loud. Her robust
laughter penetrates Mr. M so strongly, and to her surprise, a gesture of laughter comes from his
deteriorating throat. For the first time in the eight months she has been caring for him, she watches
him express happiness. Tears form in her eye, for Christine feels, she has just received the best
reward in her entire career as a hospice home health aide.
Written by SUSAN RANDALL, RN (as told to her by a hospice home health aide)
Page | 10
Then and Now ( a confession )
Ingrid Y. Cresencio
My father is my inspiration in pursuing this career. His passing has been painful for me who
witnessed all his sufferings.
Wished I knew about Palliative Care and Hospice then-- but even so, our Philippine Care System
does not practice this delivery of care, though the value of patient dying in dignity and comfort has
always been our priority, yet, a struggle for lack of knowledge and possibly resources.
He passed without any ACP, we are left in the turmoil of going through the battle to keep him
with usor to let go for he is in great discomfort...it was hard.
Finally when my mother decided for a DNR decision, I was hesitant.
I thought I've failed him, me being a new graduate nurse by then.
He passed with all his loved ones on his side, but i couldn't forget the last hour; he died grimacing
in agony.
Hospice opened my eyes to the great reality beyond what i could pathom. My feeling of guilt gone
but only frustration that i could not afford him comfort from pain then. Thus, I wish to share this
expertise someday to other devoted families like my own, to the many sincere and loving
caregivers like myself---- That dying should never be a painful process, yet, a beginning of new life
without suffering.
I wish to pass on the gifts---to reminisce, to gratify, to let go...
for everyone to make most of their time feeling these words...
"Thank you" "I'm sorry" "Goodbye"
Page | 11
Nourished Spirit
After a long holiday weekend combined with me being out sick for a few days, it was time
to return to the home of my terminally ill patient, Mr. Joey. It had been seven days since I last
visited. This pillar of his family was sad a week ago, showing me a side his family didn’t see. He
felt safe enough to cry in my presence when we sat alone on his sofa that day. The closeness
between us grew so strongly, like an invisible film of superglue bonding our souls. I felt honored
to receive his trust. The report from the other nurses who visited in my absence was that his
illness was progressing rapidly; daily nursing visits were needed.
The maid lets me in through the front door. Mrs. Joey stands at the top of a plush
stairway; she speaks to me over the railing, “Are you okay, Sue?” She is concerned about my
health since I was out for a few days, but I don’t like our clients worrying about me. “Yes, I’m
fine. Is Mr. Joey up there?”
I walk up the soft carpeted stairs to stand beside her. She tells me her husband hasn’t even
gotten out of bed yet, hasn’t eaten anything, and hasn’t taken his pills; it is already mid-afternoon.
Her fingers are pressed hard to her cheeks, eyes look up to the ceiling; the worry hangs in the air
like a dark cloud filling the room.
We walk together into their bedroom to the sound of loud gurgling. Mr. Joey’s mouth is
open wide, his skin pale with brief periods of no breathing. He is lying in a queen sized bed and
there is no bedside commode. I think, good grief, why didn’t the other nurses order the proper
equipment for here? I wonder how he will walk to the bathroom. He looks close to dying, drops
of perspiration rest on his forehead. A hospital bed, at least, would make him more comfortable,
he could elevate the head of the bed for all that gurgling.
When I touch his arm, eyes open gradually, he is running a fever. He asks for help to
walk to the bathroom. I hand him the walker when he stands, toothpick legs wobble with each
step. I wrap my hands around his bony arms to support him; he is so light from all the weight
loss.
Luckily he makes it back to the bed and sits on the edge in a white tee shirt and crinkly
pajama bottoms. I kneel in front of him for our serious conversation about bringing in a hospital
Page | 12
bed, preparing for this next stage. Mrs. Joey sits on the bed beside him with her arm over his
shoulder. I tell them both that the time has come; he will be bedridden soon. Mr. Joey looks
down at his swollen feet resting on the floor. There is a very long silence. Mrs. Joey hands him a
tissue to wipe his tears and to blow his nose. His lips quiver in the way of a person in distress,
trying to say words that are coming from deep in his heart. When he speaks, it is faint and slow,
“I know it is time, Sue, but I was waiting for you to come back.” There is another long period of
silence before he continues. “You have a calming quality and now I’m ready for the bed.”
There is a stirring inside me too great to put into words, a sensation that makes me cry too.
This connection between us is the sorrow, as well as the joy, of working in hospice. Human
chemistry cannot be bottled into a hospice training class; it is unexpected, free flowing. I could
feel his pain, but I could also feel his precious love.
This is how it is with some patients. The monetary compensation for my job is important
to function in this world; it feeds the body. But patients like Mr. Joey feed something much more
important, he nourished my spirit.
- Susan Randall, RN
Page | 13
Love Letters
As members of a hospice team, we have daily opportunities to participate in the love stories of
our patients. Sometimes we step into a patient’s existing love story. The patient and family share
their life history, framing their present with their past. We walk the intimate path with the patient
and family toward their future and final destination.
Other times we have patients who do not have family members present or able to share, create or
maintain a love story. It is for these patients that our actions and interactions become the love
story. The love letters we write are in our clinical notes. Notes filled with documentation
including: “Smiles at this writer, and nods head ‘yes’ when asked if he remembers me.... Able to
squeeze writer’s hand and shaking. Given PRN Lorazepam...for signs and symptoms of anxiety.
Soft music also initiated to help with anxiety.” And further, “per protocol routine
checks/cares/repositioned completed the NOC shift, gentle body massage with lotion, peri/cath
cares completed, applied skin barrier...assisted RN with dressing change, pt has been shaved, nail
cares completed, face/hands/ears washed, oral cares completed, lip balm applied, bedding and
gown changed....” With each and every action we have the opportunity to create the love story
every patient deserves at the end of life. Each of our clinical notes is a love letter reflecting our
love story with the patient.
The final letter might read, “Social worker received a request for volunteer vigil for patient from
RN. Worker contacted vigil volunteers and coordinated vigil for this day from 12:30PM –
11:30PM.” Concluding with, “Pt died peacefully with vigil volunteer bedside.” The next time
you read a colleague’s note stop for a minute and admire the love letter they have written.
Katie Osburn, LMSW
Good Samaritan Home Health and Hospice
Prescott, AZ
Page | 14
My friend; My love.
I lost my friend last night;
He left while I watched him sleep.
I loved him and I told him so;
He loved me and I let him go.
I lost my friend last night;
He left while I watched him sleep.
Kathleen K Curran, CRNP
Page | 15
Connections
For the time we have…minutes, hours or days,
Let’s hold onto the feelings and memories and hope.
The time that we have is for sharing, not wasting.
For the time that we have, let’s love, laugh and cry,
A touch, a sigh, a smile filled with the joy of connections.
The time we have is for me, and you, and ours.
For the time we have is threaded from past to present to future,
Not isolated in pain or grief or the fear of a moment,
But a series of connections from you, to me, to them, to God.
All the time we are given comes out of the time others had,
And will become the beginning of time for someone else.
The time that we have is for celebrating connections.
For the time we have ….minutes, hours or days,
Let’s hold onto the feelings, memories and hope.
The time we have is for sharing, not wasting.
Pat Poticny BSN, RN
Wife, mother, daughter, grandmother, granddaughter, sister
Page | 16
An Essay
Playing Charon
Author: Katherine Mead, RN
Even though it was a Friday night, I still picked up the shift. The scheduling coordinator from the home
health company I worked at had already called me twice about this new client who desperately needed a caregiver.
As a nursing student, I needed the money more than I needed a free Friday night, so I agreed to take the shift.
When I pulled up to the client's home, I couldn't find a place to park. There was a buzz of activity. A van
blocked the path to the entrance while an older woman carried cardboard boxes into the house. Inside, a young
man and an employee from my company flitted around the dingy home. After I made my presence known, my
fellow employee, Ashley, made introductions. "This is Tom, Mr. E's grandson from out of town. And this is
Sherri, the hospice nurse." Hospice? The scheduling coordinator didn't say anything about this client being on
hospice when I took the case.
Being a relatively new nursing student and home health aide, I didn't have any experience with hospice. I
started to worry. Ashley led me to the bedroom to meet the client, Mr. E. And there laid my first hospice patient.
I was shocked by what I saw. He was emaciated, just skin and bones. His eyes were closed, his face stubbly and
clenched in pain, and an uncleanly odor lingered in the air. While I was verbally assenting I would be able to care
for the man, I'm sure my face betrayed my lack of confidence.
We stepped back into the living room. The hospice nurse gave us some final instructions before leaving.
The grandson went back to the kitchen to finish some paperwork. Ashley gave me the background of Mr. E. His
wife had died in the last year and after that he became a recluse. His family hadn't heard anything from him for a
while, so they sent someone to check on him. They found Mr. E without a crumb to eat in the house, badly
soiled, and unable to speak. The grandson came immediately and set up hospice and home health. Ashley had
been here for hours, caring for Mr. E and tidying up the house. Now she had to leave and it was my turn to care
for the dying man.
The first hour or two I continued the cleaning that Ashley had started. I checked on Mr. E frequently, but
Page | 17
could hardly bear to stay in the room for more than a few minutes. I also spent my time visiting with his grandson,
who really needed encouragement at this difficult time. After a while, the grandson declared he was going out to
relax after the stressful day. I agreed it would be good for him, but inside I was terrified. What if this man died
while I was here alone? After he left, the place became eerie. Mr. E's oxygen concentrator hummed in the
background, an oversized clock ticked in the distance, and creepy shadows danced along the walls. Even though I
had some free time to study, I couldn't concentrate. I kept peeking into the bedroom to make sure he was still
alive. I watched his breathing. There were long periods when his chest would not rise, and then he would take a
gasping gulp of air. I sighed in relief. This went on for a long time. I brought in a chair and sat next to him. I took
his cool hand in mine, squeezed, and then held on firmly, letting him know I was there.
As much as I wanted to believe it, this man didn't need his laundry washed, he didn't need a vacuumed
floor. He needed someone to be with him, to watch over him so he didn't have to be alone with the demons I'm
sure he experienced before his family found him. We often feel the need to keep busy when facing an event such
as this. Cooking and cleaning seem of utmost importance. We think these are the things that need to be done,
these will bring comfort both to ourselves and to others. But the only thing I needed to do that night was to sit
with that man. He was facing the final journey of his life, and he needed a traveling companion.
Page | 18
MY FAVORITE MARTIAN
Author: D Handy RN
NANO,NANO AS MARTIAN’S USED TO SAY.
GREETINGS TO ALL WHO CAME TO VISIT, AND WELCOME THEM GARY DID. HE AND
JACKIE WOULD ALWAYS MAKE THEIR COMPANY FEEL RIGHT AT HOME. WHAT A WARM
AND INVITING HOME IT WAS TOO.
WHAT CAN I SAY ABOUT THIS MAN EXCEPT HE WAS AWESOME! THIS IS A MAN WITH A
TERMANIL ILLNESS WHO LIVED EVERDAY ‘FOCUSED’ JUST ON THAT DAY. TOMORROW
WAS ANOTHER CHAPTER.
HE WAS MATICULOUS ABOUT HIS CARE AS WELL. DO YOU KNOW HE MADE A COMPUTER
PRINT OUT OF EXACTLY WHAT HE TOOK AND WHAT TIME IT WAS TO BE TAKEN. AND
WHEN HIS MEMORY WASN’T AS GOOD… HE BOUGHT A DIGITAL PILL ORGANIZER THAT
VERBALLY PROMPTED HIM TO TAKE HIS PILLS ON TIME.
HE WAS THE PERFECT CLIENT FOR JACHO EXCEPT FOR THAT NASTY CIGERRTTE HABIT.
BUT EVEN THAT HE MANAGED TO COMPLY WITH AFTER CONTINUED EDUCATION.
I LEARNED A LOT ABOUT “THE MOMENT” FROM GARY.. …LIKE THE BREATH TAKING SEEN
OF WATCHING AT LEAST 30 HUMMINGBIRDS AT ONE TIME FIGHTING FOR THE SYRUP
THAT GUY DILEGENTLY MADE EVERY WEEK TO PUT INTO THE 4 FEEDERS HANGING
OUTSIDE HIS WINDOW. WHAT A MAGNIFICENT SITE TO SEE HUMMINGBIRDS BACKED UP
IN LINE WAITING FOR THAT OPEN SPOT!
SO, WHY DID GUY THINK OF HIMSELF AS A MARTIAN?? BECAUSE HE HAD DEFIED THE
ODDS OF A CHILDHOOD ILLNESS AND THEN AGAIN IN ADULT HOOD WHEN HE HAD HIS
RIGHT CANCEROUS LUNG REMOVED AND THEN CAUGHT PNEUMONIA. NO ONE THOUGHT
HE WOULD SURVIVE…BUT HIM! AND HE DID AND THE FUNNY THING WAS HIS
PULMONOLOGIST SURVIVED ILLNESS AS WELL. THEY CALLED THEMSELVES MARTIANS
AND EACH TIME THEY MET THEY WOULD SAY “NANO….NANO” “MORK AND MINDY STYLE
IF YOU CAN REMEMEBER THAT FAR BACK.
SO, BE IT FITTING THAT THIS GENEROUS, CARING, LOVING, AND METICULOUS GARY IS MY
FAVORITE MARTIN.
REST IN PEACE GARY………………
Page | 19
The Love Tree
Author: D Handy RN
Sherry always talked about her garden,
Her little “Oasis” she called it…
Well, one day on one of my nursing visits when she
Was resting quietly, almost non-responsive
I stepped outside to view her backyard
There I saw beauty as only seen through her eyes.
A quiet sitting area stirred my attention
Until I saw the Grapefruit Tree
With it’s beautiful melons ripe for the taking
I asked Kenny if I could have one
He said absolutely, take as many as you like…
He then commenced to tell me a story about that particular tree…
He said, that he bought that Golden Beauty Grapefruit for his wife, Sherry
When they got married
And that this tree was her welcome gift to his home, her new home
Well, needless to say I felt the love immediately in that tree
With it’s beautiful fruit.
So, a few weeks later after what seemed to be a never
Ending dying process,
(that Sherry she was a fighter, alright)
I asked myself what else has not been done to help her
Through this End of Life Process: who hasn’t said Goodbye or I’ll be ok without you?
And then… I remembered the Grapefruit in my refrigerator!!
That night I sliced and diced that grapefruit and had my two sons’ join me in toasting to Sherry
and Kenny, and the Grapefruit Tree of Love.
She died peacefully 4 hours later.
It was The Tree of Love she wanted me to experience.
And I did whole heartedly…………………..
Rest in Peace Sherry
Page | 20
THE GLASS IS HALF FULL
Author D Handy RN
When I was in the early part of my marriage my husband used to get frustrated with me, because of my
pessimism. He would say instead of looking at the glass as half empty, make an effort to look at the glass
as half full.
One day, on one of my 1st
nursing visits to meet my new patient I realized she would not be with us too
very long and called her son to notify him. He was saddened by this fact and he told me
the last time he saw his mother she was angry that he did not bring her a candy bar and soda. He asked
me if it would be alright if he brought her one now. I said of course it would be fine.
He then began to tell me of his hardships this past year or so, which he and his wife had their own
mortgage and escrow company that with the market turndown they have now lost. He also explained that
he was in the process of losing their home as well. Charles told me that when things were going well, he
brought his mother out from Tennessee to live with him. He said as things started to get worse for him so
did his mother’s health. He said she used to blame herself for his misfortunes. As the sadness came over
his voice I asked him, “ Charles I bet you had some good times with your mom back then, huh?”
His voice sparked up and he said “oh yes, one thing my mother always used to talk about was the time I
took her for a ride on the back of my Harley. We went from Chino Hills to Carlsbad and then all the
way up the coastline to Malibu. She just loved the ride, one of the high points in her life she said.” I told
him what a beautiful memory that was and how it brought goose bumps to my arms it was so touching.
So, the next day on my visit to see his dying mother, I noticed how close she was to death. I also noticed
that there was no candy bar or soda at her bedside. So, I sat down at her side and began to tell her how I
had spoken with Charles and that he was on his way with a candy bar and soda for her. I could here
acknowledgement in her moan. And then I began to reenact the story Charles told of the Harley ride up
the coast. She further acknowledged my words. And it seemed as though calmness came over her.
She passed away peacefully half and hour later.
In speaking with her son later in the day, he told me how he was on the way there with that candy bar and
soda, he was just too late. So, I made sure I told him that I sat at his mother’s bedside and told her that
Charles was on his way with a candy bar and soda, and how I reenacted the Harley ride up the coast.
I could hear his voice choke up as he thanked me.
As I got off the phone, sadness came over me and then I thought what my husband would be telling me
right now. He would say “Dawn don’t think about the sadness of the situation, think about how richer
your life is because of it.”
“Life is a journey-don’t forget to enjoy the ride”- In memory of Douglas Handy -Nov. 17th
1959-Feb 25th
2003
D Handy RN- Nov. 17th
2009
Page | 21
Beep
Author: Juli Caron, CSJ
Beep! Beep! Beep! “Oh yes that is the pager and I am on call.”
But it is 3:00 a.m.! I need to put my awake voice on.
“Someone has died? They need/want a Chaplain?”
“I will be right there,” I hear myself say.
There in the room is a very peaceful appearing woman.
Her daughter is at her side. Holding her hand.
“Will you pray?” she asks.
“Of course,” I respond. And we pray, calling on Jesus,
And ending with the prayer Jesus has taught us to pray.
“Our Father, who art in heaven, hallowed be your name,
Thy Kingdom come, Thy will be done, etc.” We all say it,
Thy will be done, but in this case do we mean it?”
Another page, another death. Mary North?
I think to myself, “her husband will be devastated.”
I go to the floor and off the elevator comes Joe,
Mary’s husband, he falls into my arms and sobs.
Hand in hand we walk to Mary’s room.
Joe, throws himself onto Mary’s chest and sobs
And sobs. Tears run down my face.
Beep! Beep! Beep! Another page.
Another death. I hear sobs echoing in the room
As we pray. We pray the Lord’s prayer;
“Thy will be done, etc.
I then go to my office to search my heart,
To “have a little talk with Jesus”,
Thank you Jesus for calling me to this ministry.
My heart is full and broken, scarred and marred,
Weeping and sad, yet full and joyful to over flowing.
I meditate on the Gospel of Mary while carrying Jesus
In her womb, and going to Elizabeth and;
As they greeted one another,
Elizabeth felt the babe in her womb leap for joy.
The tender intimate moment of that greeting;
Same is the intimate tender moment of being invited
Into the life of someone and his/her family
As one enters Eternal Life.
No money, no words, nothing can compare with this
Privilege. This is why I get up at 3:00 a.m. and
Put on my awake voice and say “I will be right there.”
Page | 22
I cared for a patient who was dying today
Author: Juli Caron, CSJ
I cared for a patient who was dying today.
My first time
Scary at first. I wondered; how will this go?
What will it be like? Will it be quiet, or will there
Be a noise?
It is so quiet in this room,
All I can hear is Hilda’s breathing.
Hilda is her name.
Her breathing is shallow
Her chest is barely moving.
Her skin is warm to the touch.
Hilda is alone in the room,
I wonder where her family is.
Does she have family?
Not so sure I want to be in here alone.
O.K. I can do this.
Never cared for anyone who has died.
I can do this.
I pull up a chair,
Take her hand,
I listen to her breathing,
Her breaths begin to get less and less,
Is this what it is like? I ask myself.
Not so scary,
With one more breath, her breaths have stopped.
Hilda has died.
Wonder what it is like to die.
So peaceful and quiet.
My privilege to be here.
Did Hilda see Jesus?
What is she seeing now?
A gift has been given to me.
Thank you Hilda.
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Quality of Life????????
Author: Juli Caron, CSJ
Heart wrenching
What are we to do?
What would she want?
17 year old; cardiac arrest.
Severe Brain damage
Heart wrenching
What is best for her,
What would she want?
Does anyone know?
What is right?
Is there a right?
Is there a wrong?
Breathing on a machine
On Propophol
Is this a way to live?
Is this quality of life?
Braces on hands and feet,
Tube in her throat
Connected to a ventilator
Tube in her bladder,
Beeping going on here and there
God help us know what to do,
Heart wrenching
Or is it nothing to do,
But to wait
Give us the grace to be faithful
To your call within us
To bring life into this
Labor of love.
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There is great commotion all around
Author: Juli Caron, CSJ
There is great commotion all around.
Beepers are going off,
Respirator alarms are buzzing,
Nurses and other staff are moving as fast as they can.
Me?
I have a patient who is going to die
In the midst of all of this chaos.
Bright lights all around.
Not very peaceful
Families are walking in and out
Doors are slamming shut
Noisy and not very peaceful
I have a patient who is going to die.
How can I do this?
I hear sobbing coming from the room
I don’t know what to do
How can I do this?
O.K. I can do this
I cannot fix it,
Wish I could
Respirator is going to come off?
YIKES, what/how do I do that?
O.K. I can do this
I cannot fix it,
Wish I could
Respirator is removed
Family is all around
I encourage them to hold his hand
I am present too.
George stops breathing
Peacefully and quiet
In the midst of the chaos
A sacred event has taken place
Thank you for this gift.
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To: Hospice Caregiver X
Author: Lara Slavtcheff
This isn’t me, you know
I’m sick
and I tell you
this isn’t me, I’m not myself
I may have lived a long life
or not so long
I’m a Grandmother
a Grandfather
a Mother, a Father
a Daughter, a Son
a Sister, a Brother
a friend, a lover
a wife, a husband
an Aunt, an Uncle, a cousin
a Sister-n-law, a Brother-n-law
I am someone, I am loved
This isn’t how I used to be
I want to tell you
because you won’t know
you who care for me now
So, I ask you
to look me in the eye
and address me by name, hold my hand
show me the respect
I haven’t had time to earn
from you
I’m a person with a PhD who speaks 7 languages
but I am mute now
or mumbling incoherently
I’m the gentlest soul
but you wouldn’t know
by the way I curse, punch,
and scream
My body’s decline
has taken over my mind
you see
and I am helpless,
at your mercy
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I don’t hear well or at all,
I can’t eat well or at all,
I can’t see well or at all,
I can’t walk or get out of bed
or I can only lay still
The time has come
where the flower of me
is withering and soon to die
and you have never known me
in full bloom,
but I was oh so beautiful!
So, when you look at me
I wish you to see yourself
be gentle, be kind
do unto me as you
would want done unto you
and know that
I will forgive
your momentary human frailty
this is all I ask
I hope only that you too
will want compassion, gentleness,
love and respect
when you lay withering and dying
among strangers,
for make no mistake
someday you may be me
looking at you
from a bed just like mine
Please, honor me now
in my time of dying
like you would be joyous for me
if you were at my birth
Are birth and death not both equally
momentous and profoundly awesome?
If you do this
I will send you a thousand thank you(s)
from beyond the grave
and a thousand blessings
that your death might be like mine:
without pain and distress,
dying with honor, dignity, love and respect.
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Stand By Me
Driving to my dying patient first thing this morning I’m anxious to see if his night was
peaceful. The rattle had begun the day before, gurgling secretions rumbled in his throat.
Another nurse visited for me yesterday. Even though I wanted to be the one to go, there are
times when I can’t get to everyone. Seeing patients every week creates a bond, but I knew the
other nurse would do everything right.
This morning I arrive to find him in poor condition. He is struggling to breathe with fluid
in his throat. His head moves from side to side, arms thrash wildly, eyes squint, and a piercing
moan is the only sound he makes; it is an awful sight. Fear builds inside me, my eyes open wide.
I don’t know what to fix first. It’s one of those moments when I have to reach back into my mind
to rely on training and my years of experience. I run out to my car, dig frantically for a catheter,
and run back in. After giving medicines for pain, for restlessness, for secretions, I insert the
catheter tube. The pain from a full bladder is eliminated. One step at a time I tell myself; stay
calm.
His daughter Jan rushes through the front door. She takes a look at him lying in the
hospital bed and asks what she can do. She paces from room to room, pleading for help. “I
don’t care what it takes,” she says, “I just want my dad to be out of pain.”
It is time to wait for the medications to do their work; I’ve given the maximum amount
ordered. I get on the phone with my manager and say, “There is an acute crisis here. Can this
patient go to our inpatient facility?”
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I call our nurse practitioner, Debbie. Hearing her voice is like being a little child lost in the
woods and suddenly hearing my mother’s voice. I absorb Debbie’s much needed support. Her
calmness radiates into me, through me, and makes it all the way to the patient’s daughter when I
get off the phone. I stand beside Jan looking at her father and say calmly, “Okay, he will be
comfortable soon; this is the plan.” I follow Debbie’s instructions to give more medications, and
wait for an hour; later he will be transferred to our facility.
The patient’s wife, Gloria, and Jan are waiting for the medications to work when Allyson
arrives. The timing of this hospice social worker is perfect, waiting is hard. Allyson comes into
the room with open arms, gives Gloria a hug; one of those long squeezes that shows genuine
love. Gloria closes her eyes during the embrace. When she opens them tears line the inside of
her eyes; Allyson has reached the sadness, some tension is relieved.
Jan’s phone rings. Our hospice Chaplain, Mi Sook, is on the other end offering help.
There is a warm feeling inside me, pride in our hospice team, a sharp awareness of compassion
that comes from the human heart. We are all working together well, relieving more than the
patient’s pain. I really love this job.
When the patient is comfortable and Jan understands what to do next, I leave the home.
Allyson stays to continue emotional support. I turn up the volume on my car radio and the song
“Stand By Me” is playing. I sing the words out loud, “If the mountains should crumble to the sea,
I won’t be afraid, as long as you stand by me.” Little goose bumps appear on my arms. It is like
some fabulous epiphany has just come to me. Isn’t this what hospice is all about? Debbie stood
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by me, I stood by Jan, Allyson stood by Gloria, Mi Sook stood by Jan, and on and on. It is
beautiful!
I pull into the driveway of my next patient when my cell phone rings. It is Allyson telling
me the patient just died. I return to the home for the death visit. Jan is thankful her dad is no
longer suffering. When the funeral home director is on his way to pick up the patient, Allyson
and I leave the house. Walking to our cars she exhales loudly and says to me, “That was too
intense.” While Allyson tells me the story of the patient’s last breath, I sing the song in my head,
and with little bumps on my arms, I faithfully stand by her.
- Susan Randall, RN
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On Her Final Day
This woman was 51 years old, and admitted to the hospital about a month before she died. I
didn't meet her initially, the consult done by one of the other members of our team. I think we
all had a hand in helping her with her goals of care, and options for treatment.
Years of drug use left her scarred and cynical, and with a hefty methadone prescription that she
received usually at the Tacoma methadone clinic. Her methadone was stopped when she could
no longer travel to the clinic, a requirement for a methadone maintenance program. We all tried
to help her cope with her ever increasing abdominal pain and bowel obstruction from her
worsening ovarian cancer and her fear of dying.
I'm not sure which person helped her see that being coded would be a painful, dramatic and
futile end to her suffered life. She accepted her death and then rejected it. As the days passed, she
grew weaker and had more discomfort. She accepted that her death would be painless and quiet.
These were her wishes and she felt comforted in knowing that her family could hear her speak
them. At 51, it is hard for family to let go as well as the suffering patient. Sometimes, more so.
She was on huge amounts of opiates, hundreds of milligrams of dilaudid, astronomical amounts.
At times, she'd seem almost stuporous, waking up in pain, angry that she wasn't being adequately
treated. She had a venting gastrostomy placed which we hoped would relieve some of the
distention in her abdomen. Instead, she decided to eat a sandwich and the tube got clogged,
causing her to have even more pain and nausea. Interventional radiology was called. They
replaced the tube with a bigger lumen and said "Don't let her eat solid food"- which was relayed to
the family and the patient. This time she understood.
Because of her pain medicine needs, we would not be able to place her in a skilled nursing facility
for end of life care. Her daughter, strong and competent, had 2 very small children. Indeed; she
started labor and broke her water in her mother's hospital room early in her mother's admission.
We had no discharge plan that made sense or was feasible. No one could care for this woman at
home. She required round the clock skilled nursing. We admitted her to GIP hospice. , and
ended up getting the best of both worlds.
Daily, the hospice nurse would come and check on her. Their hospice chaplain, bereavement
coordinator, social worker all came in and provided their expertise on matters that they deal with
regularly. Her 2 sons came to visit, knowing that it would most likely be the last time they saw
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their mother. She felt well enough that day to dress in a blue nightgown and have pictures taken
with all her children, together and separately. She posed with the baby, her granddaughter, her
sister. She looked beautiful, though it was not hard to see the sadness in her eyes. She was
relieved and so was her family, though at times they asked, why does she sleep so much more
now, when she was awake so much before?
Carefully, we tried to explain, with soft voices and loving words, how sick this woman was. She
had used up her available energy that day posing for pictures with those dearest to her.
One morning, when we were alone in the room, she took my hand and told me how she was
afraid to die. In spite of her conversion to Christianity, she told me she had done some things that
she felt ashamed of. She told me how she wanted to live and help her daughter with the new baby
and her 4 year old granddaughter. Babysit, make meals, do laundry, anything that she could do to
help her daughter feel her support and loved. She cried, knowing that this would not be the case.
We talked about forgiveness. After some time she fell asleep.
From there, things progressed rapidly. One day her tube was clogged again. She was in pain,
vomiting. We had the tube replaced but this extreme wiped her out. While I was upset that it had
taken us several hours to figure out the problem, I also knew that had she been home, she would
have been so much worse off. It might have taken days to have the tube replaced. She would have
needed transport. All these things take significant toll on her frail dying body. At least here, it was
another trip to interventional radiology. Yet, even so, she was exhausted.
The next day she only spoke to me to tell me how wiped out she was. Her twin sister, railed
against the slowly evident approach of coma. Signs and symptoms of approaching death were
talked about. It was hard to accept.
Daily, hospice came to visit checking in and sharing their remarkable wisdom with me and the
floor staff. The day and evening shift nurses helped create a care plan that would help the other
nurses caring for dying patients what it means to focus on comfort. No more oxygen saturations
but a maintaining careful monitoring of pulse, respirations, facial expressions, moans, restlessness.
She was dying and to be comfortable would require more than asking her what number her pain
was at. This is when empathetic presence and ability is most needed.
We took turns, the hospice nurses, the floor nurses, the chaplains as well as the family's prayer
group, providing support for the family. Her daughter, always so strong, really the mother of her
mother, now needed deep support and nurturing.
On her final day, as her skin turned to ash and her breathing came in tiny gulps that could not
keep up, her daughter, young and wise beyond her need, stood in the room, tears welling up in
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her eyes. She had asked me, a few days before. How do you prepare for your mother's death?
What do you do, after it happens, do you just go home; do the same things you've always done?
Pretend it didn't happen?
We gently invited her daughter to sit, her infant in my arms. He fought the pacifier, turning his
cheek, looking for the warmth of his mother's nipple. I handed the baby back to her and realized,
yes, when your Mother dies some things don't stop. Infants still need to be fed. The grocery
shopping will need to be done. The clothes taken out of the dryer and folded. But you never
forget that moment. This time in someone's life, the hours of vigiling at the bedside of someone
you love when they are dying are imprinted, coloring ones view of death and dying. One of the
most important reasons to do this work correctly, with passion and love. I was privileged to watch
this courageous, strong and loving daughter hold her dying mothers hand, while she breast fed
her month old infant. The circle of life evident and tangible.
A phone call was made to the family's church community, who came in and stayed with the
daughter and sister. The hospice nurse also stayed for about an hour and then came back later in
the day to provide support. I came in later on and there were church people, old friends, family
and nurses attending to this woman, as well as her family. I said my goodbyes to them, hugging
her daughter and sister as I left. They knew that death waited in the room. I knew we had
prepared them the best we could.
She died about 7 o'clock that evening. She was as comfortable as we were humanly able to make
her, thanks to the concerted efforts of so many people. Her body was brought to the hospital
morgue after her family said goodbye. A month of pain, fatigue, vomiting and sadness transmuted
by compassion, respectful understanding and forgiveness. Helped with medical knowledge to
ease her physical suffering. The spiritual, emotional, physical body all cared for by a twofold team
of dedicated professionals, working together to not only treat the patient, but her family as well.
Truly holistic care done routinely, due to people who care, who have experience and know that
good care of the dying helps not just the person but extends outward into the community and
beyond. We will all experience death. It is an inevitable, the end of life. Helping people to define
their life by describing to their family and care providers how they want their death to be helps
transcend the pain of grief by helping to eliminate the agony of regret. Is it an impossible task to
perform perfectly? Of course, but that doesn't mean we stop trying.
- Cheryl Waitkevich ARNP