Thursday, 23 April 2015

Upon Learning I Am Soon To Die

How harsh the softly spoken words,
how kind the man of cruel task
in telling tales of flick’ring flames
of candle burning down to wick.

How quick my eyes begin to dim
as lights go out as hope is dashed.  
I suffocate as walls close in
and terror strikes this heart of mine.

How distant are the humming sounds
of those I know who speak of love
and offer me their fond farewells
as panic swells and overwhelms.

How strange the speed of passing time
when heartbeat slows til almost still
and bellows gasp each laboured breath
and terror grips a spirit quelled

How can the candle flicker out
upon this life I yearn to live? 
How can the flame of me just die?
I don’t know how I can’t exist.

Anna :o]

For those of you who don’t know, I work in a care home.  All of us who work there feel privileged, privileged to really care for the residents who reside there, in their home.

It is like any real home, your home, my home.  There are happy times and bad times, fall-outs and forgiveness.  I regard the residents as my friends and they feel comfortable with me too.  Of course there is and must be professional boundaries in that I would not offload any problems I have or have had onto the residents for they have their own burdens to carry and it would just not be right.  There are many other boundaries too, lines that must not be crossed with vulnerable adults.  And they are not crossed.

That aside, the residents are my friends and I value that.  I know them inside out, know their strengths and weaknesses, know what they can and cannot handle.  The residents are why I love my job. 

Sometimes problems occur with those fine folk who exist in GP land in that they have quotas to meet, boxes to tick, orders to be followed (from those who exist in the higher echelons who know nothing of medicine at all).  I wrote of this many moons ago, here: http://hypercryptical.blogspot.co.uk/2010/09/harm-that-we-do.html

In our home we will not do certain things to make GP’s happy if we feel it will cause psychological harm to our residents – I cannot say much else or it might identify my home and its sister homes.  (We are small and mighty but each home exists autonomously.)

One of the things we have an issue with is the GP’s belief that everyone has the right, the need to know that they are in the process of dying.  Fair enough, so they have – but at the same time there is also the right, the right of the need not to know, an acceptance of the inability to cope with the knowledge of impending death.

And so above is Jimbo’s story.  Jimbo came into this world with congenital birth defects, defects that affected his ability to mobilise and because of this defect, he was the butt of jokes and cruel jibes and began to exist within himself, a recluse to save himself from hurt.  As the years passed he became apathetic to his own needs and neglected himself.  He entered our home with a diagnosis of dementia.

Across the first few weeks it became clear to us that Jimbo did not have dementia, rather his apathy and depression, his reluctance to engage had been misdiagnosed as such.  We sought the input of his new GP – this needed as he had moved out of his previous GPs catchment area – who treated his depression, but would not shift his diagnosis of dementia.

Across time we developed a rapport with Jimbo and he began to feel valued, that he had a place in this world.  He still would not initiate conversation but was glad when we did; a smile lighting up his face and he offered us snatches of his life.  He remembered our names.

As years passed he physically declined and began to experience pain for which he was treated.  On one GP visit, the GP noted that Jimbo was now in the slow process of dying and we requested that Jimbo not be told this, as we knew he was terrified of same.  We felt we had the right (on Jimbo’s behalf) to request this as he had no next of kin and we were concerned for his spiritual welfare.

This request was honoured, that is until a time death neared, and the GP took it upon himself to break the bad news as he thought Jimbo had-the-right-to-know.  This well-intentioned decision had an immediate devastating affect on Jimbo as we knew it would.

His terror was palpable.  From that moment forth he refused food, fluids and meds, fearing things hidden to hasten his death.  His anguish his terror added to the now untreated depression and physical pain and his life became unbearable, despite his determination to hang onto it.

I was on shift the night he died; knowing as I did this would be the night.  He was screaming out in pain and I knew I could not let him die like this, so phoned out-of-hours docs and explained the situation, asking if they could help.

A doc arrived some thirty minutes later and gave Jimbo pain relief and a sedative via injection.  Jimbo was terrified at the sight of the syringe and I assured him that the doc was there to relieve his pain and not to kill him and he submitted – but never spoke to me again.   I sat with Jimbo til he died.

I often think on this, wondering whether I requested GP intervention for my own peace of mind and not for Jimbo’s sake.  For despite relieving his pain, all this action did was increase his terror and led to his distrust of me and in essence he died very much alone.

Were it not for his GPs good but misguided intentions the situation would have never arisen.  Jimbo would have died pain free and at peace with the ones who loved him.  Some folk cannot deal with the knowing and it is wrong very wrong to force it upon them.

Shared with the good folk at dVerse OLN, hosted by Grace, cheers Grace!  
Also entered at Poets United Poetry Pantry.  Thanks Mary!

Image: courtesy of Wikimedia Commons

28 comments:

Claudia said...

i think it is so tough to learn that you're dying... a colleague's father learned this and there was not much time left - i got a glimpse of the struggle and steep path

HA said...

Oh! I am typing words and deleting them because I seriously don't know what words I shall use right now.

A beautiful poem, bringing about the pain of knowing that you would soon die. The ending, " I don’t know how I can’t exist." says it all.

And I understand the background that you have provided to the poem. It adds into the depth of your words. It is saddening that someone would leave this world in such a way.

And what you do is wonderful. Working in a care home must be difficult.

Glenn Buttkus said...

The prose epilogue is a short story of itself, a fascinating glimpse into your actual world. We have grown accustomed to your poetics of soaring metaphysics, so this piece is dramatic & heartfelt. The prose poem, using Jimbo's POV has its own pulse & stoic brilliance. I worked with the elderly at the VA for 30 years so your concerns resonate with me. I like the lines /bellows gasp over labored breath/& terror grips a spirit quelled/.

Björn Rudberg said...

Anna, this touched me so much.. both the story and the poem. I think the right to know has to be combined with knowledge on how the patient would handle it.. I do not even know how I would handle it, and if I cannot do anything, maybe I would prefer not knowing...

Hayes Spencer said...

The short story is as powerful as the poem. such care homes are made better by people like you who care. "How can I cease to exist?" such a heartfelt cry. Several years ago, I received a diagnosis of a cancer that should have killed me. I remember sitting in my car, feeling, hearing that humming in the air around me. And I cried and screamed, what will happen to my family when I cease to be? how can I go on unto death, looking at the world around me and walk around as if nothing has changed? I only know, it was because of loving caring people that I made it through. A truly incredible piece.

lindakruschke said...

Your poem is poignant and haunting. I also appreciated your explanatory essay. It is sad to see people fear death. I understand the fear of dying, which is much different than the fear of death itself. Thank you for sharing. Peace, Linda

Grace said...

That must be really tough & challenging Anna ~ I salute you for your compassion & courage in caring for the residents, specially for Jimbo ~ I personally wouldn't want to know if I am dying soon ~

Mary said...

You are a saint, Anna. You have such tough decisions to make. I would trust your judgment....and your compassion. This was a poignant poem, Anna. One that will stay with me.

Roslyn Ross said...

People I have known in this place have been at peace and surrendered although I am sure everyone is different. A poem with depth and feeling.

mishunderstood said...

This is a gripping and poignant piece. Your story is sad but really sheds some light on a subject I had never thought of. Would I want to know if I was dying...no matter what the circumstance? I think in the case of this man, you were certainly thinking of his best interest. He could have had a peaceful passing. Thank you for sharing this. Reading between the lines, I think you are an angel on earth.

Jenny Woolf said...

I do agree that some people even old and sick ones are made very unhappy at the idea of impending death, at least till they are ready for it. Then, when THEY feel it is right, they are smart enough usually to realise what is happening and deal with it in their own way.

NInot said...

Anna,

Thank you for sharing. Really, this is a post that would stay with me for a long long time.

In 2008, a childhood friend, actually we went to boarding school together and was in the band - was diagnosed with a tumor in between her eyes. She had to go into surgery. And so I visited her the day before the operation.

We laughed. We spoke to the surgeon. My friend, Az, was animated. Full of life. Of hope. "Here it is Ninot, sitting pretty." she said showing me the X-ray - it looked ominous, but I was caught up with her smile and positive vibes.

She never woke up after surgery. I prayed for her while she was in intensive care. But never saw her again, as I could only turn up at the funeral.

I am happy I have the memory of her, so happy and hopeful the day before she passed on.

And so yes, I agree wholeheartedly. We need to have hope and happiness, and love, til the very end.

bwfiction said...

governments always determine the value of life, or lack thereof.

lynn__ said...

What a heart-breaking story of Jimbo's dying "alone" in fear and pain. Glad you have a compassionate heart for your friends, Anna!

mrs mediocrity said...

This is so poignant and heartbreaking. I am glad he at least had someone as understanding as you to sit by his side.

Victoria said...

This spoke loudly to me as I nursed in long term care, AIDS and hospice most of my nursing career. Just yesterday I sat in the patient's chair of a hematologist/oncologist to receive good news and the MD seemed happy to deliver it...but I know how hard it is when the outcomes are not like that. Blessings in your very sacred work, Anna.

totomai said...

A thoughtful social commentary you have painted here Anna. You are one of the heroes of our society.

These persons need all the love and understanding..

Brother Ollie said...

We all owe a death, but it seems to be ever so far away...until it is right upon you.

Sumana Roy said...

both the prose and the poem are flow of compassion...treatment should not be mechanical...a touch of humanity is a must...

G L Meisner said...

So hard to live with such knowledge.

Gabriella said...

This is very heart-felt, Anna. You certainly work in the right place and the residents are lucky to have you among the staff.

C.C. said...

The ending line is the existential dilemma that we all face and it is a challenging one for sure. Thank you for sharing the backstory to this poem. So much more behind the words here that adds dimension. Very powerful.

Eusebeia Philos said...

A moving poem and story... it's heartening to know that you were there for someone who desperately needed a friend and compassion at such a vulnerable time.

Eileen T O'Neill ..... said...

I was a nurse and understand the care for elderly patients or resdidents. I too always felt very sad for those who were seemingly alone, with no visitors or anyone who cared about them. Dementia is such a cruel illness and impses an immovable isolation, forever. We give professionally, but also, if you have a heart, it's easy to care a little extra, when you feel recognise that situation...

Eileen

Magaly Guerrero said...

There is such desperation coming out of this poem... very telling when it comes to the fear widening the eyes of those who know when death's coming to claim them.

Your job is a difficult one--I know it is a blessing, but still, at the end of the day and weights on a heart. So thank you so much for what you do, and thank you again for doing it well... I sat with many of my clients, on their last moments, at places where too many individual saw what should be a calling as nothing more than a job.

The Bizza said...

My goodness... this is powerful. Great writing... and the backstory is absolutely heartbreaking. You are far stronger than I could ever be.

SuyashJ said...

one of the best poems i've read in a while

The Blog of Bee said...

What a powerful poem and such a sad story. My mother always said that if she was dying she didn't want to know and if I knew, I wasn't to tell her. When, after never having been ill in her life, I was told she had six months to live, I went into a tailspin. I obeyed her wishes but it was hard, very hard. Part of me said she had a right to know and the other part told me `no`. Two days before she died she told me she thought we were going to lose her. I couldn't say `yes, I know`. My family knows that if I am ever diagnosed with an incurable illness, I want to know. I don't know how I would take it but I wouldn't want my family to bear the burden of such a secret. Besides, it would allow me to put things right in any unfinished business.