Telling the Truth

connecting the dots of my life

Tag: Palliative Care

Think again!

If you think retirement
Is a piece of cake
Think again!

If you think the medical world
Is ready for you in your wild and precious young or old age
Think again!

If you think the good old USofA
Has the best medical system in the whole wide world
Think again!

If you think you don’t need a palliative care doctor
Maybe you do and maybe you don’t
And please, Think again!

It feels overwhelming to begin planning for the unlikely and the inevitable.

However, if I don’t, I won’t be ready for what might come on this side of death. Our national medical institutions are NOT, for the most part, prepared to help us die with or without dignity. Many still operate with the imperative of keeping the patient alive at all costs.

Thankfully, the picture is changing. Nonetheless, it isn’t keeping up with our aging population. In addition, waiting and hoping for the best isn’t a viable option. Especially if we have serious health issues that won’t reverse, and will end in death.

Yesterday D and I met with Dr. Amy, my new palliative care doctor. We had a long, sometimes teary (for me), often lively conversation about my health. It focused on my top five concerns, and how I might make my current situation more tolerable.

Dr. Amy gave each of us a bright pink (yes PINK!) form to fill out at home and sign. After my doctor signs it, I’ll show it to my other doctors. They’ll make copies for their files. Then I’ll post the Pink Document on our refrigerator door.

In case of a medical emergency, the Pink Form will travel with me. It’s an official Pennsylvania Department of Health document with its own twist. Instead of Physician’s Orders, it says Pennsylvania Orders for Life-Sustaining Treatment. Don’t ask me why–it’s all politics, and complicates things a bit as described above. Nonetheless….

The form includes explanations, and options for the treatment I wish to have (or not) depending on my preferences and situation. I can make changes later if I so wish.

I’m relieved to have begun this process. It isn’t about dying today or tomorrow. It’s about recording my decisions now to help avoid being caught up in endless attempts to keep me alive at all costs.

Thanks for visiting, reading and Thinking Again!
Elouise

©Elouise Renich Fraser, 23 July 2019
Cartoon found at pinterest.com

Crossing the border

Crossing the border between
then and now my mind seems
intent on rehearsing who I am
and what I have or have not done
with my one “wild and precious life”

Endless rehearsals pace back
and forth through my head repeating
and expanding a long list of reasons
why I should exist as this woman
living on an overcrowded earth

I watch from the sidelines as
unquiet thoughts spin out of
control restless and insistent
saturating the air with reasons
that will convince my interrogator
and calm my agitated spirit

This past week I worked on documents for my new palliative care doctor. I also spent more time walking in the attic than usual, thanks to our latest round of high heat and humidity.

Walking without the radio or other distractions, I found myself rehearsing much of my past history. Sometimes I resorted to singing out loud in order to stop the endless cycle of data and explanations about who I am and who I am not. And why things were the way they were.

Beginning palliative care is is about what happens next. Much of my personal work has been about looking back, making sense of what sometimes seemed to be nonsense. To that I’m now adding learning to number my days. Concretely, not just in the abstract. How will I value each remaining day for the gift it will be?

On Monday afternoon D and I will meet for the first time with my new palliative care doctor. And I’ll begin making concrete this last chapter of my life. I’m excited and a bit on edge. And yes, I’ll definitely have a report or a poem.

In case you wondered, I have Mary Oliver to thank for her wonderful question to each of us.

Tell me, what is it you plan to do
with your one wild and precious life?

©Mary Oliver, final lines of “The Summer Day,” p. 94
New and Selected Poems, Volume One
Published by Beacon Press 1992

Thanks for listening!
Elouise

©Elouise Renich Fraser, 20 July 2019
Photo found at pixabay.com

On a walk-around

On a walk-around
In my lofty attic
Sunday morning silence
Permeates the air

My mind and heart
Fly home revisiting
Large and small circumstances
Of my unscripted life

Memories flood back
Unsolicited reminders
Of turning points and
Individuals

Each a small piece of
What feels strangely like
Home away from the home
Of my weathered body

Not as it might have been
But as it was and is
In real time with real people
Some of them jerks

Important pieces
Of a great puzzle that
Still shape and encourage
Me into this —

A real woman with a real
Voice and calling
A disobedient beautiful
Daughter of Eve

Unfinished and sometimes
Impatient I wait wondering
What more will happen
Along the way

This week I’m going to schedule a first meeting with my new palliative doctor. I wasn’t expecting the end of my life to take this turn. Nonetheless, I see this new possibility as a wonderful gift. And yes, it will take significant thought and work on my part. Not just on behalf of myself, but with family members and doctors.

I anticipate getting things in some semblance of order, adjusting my thinking about what lies ahead, and enjoying what I most want and love to do. Which will certainly include writing.

Happy Monday to each of you!
Elouise

©Elouise Renich Fraser, 8 July 2019
Photo of Tybee Island Beach found at visitsavannah.com

Death and The Kookaburras

First, a poem from me, a few comments, and a poem from Mary Oliver.

One loss at a time
The challenge is laid down
So transparently
The message cannot
Be mistaken

It’s time to let go
To hold each day lightly
To give up great expectations
And the hope of getting
To the top of Mt. Everest
Or even within its foothills

Yet my body and soul
Cry out for more –
More time
More energy
More beauty
More music
As greed sets in
Along with hunger
For what I think
I’ve lost
Or never had

I’ve been unusually restless this past week. It was wonderful to connect with my new palliative care doctor on the phone. Now I’m waiting for my first face-to-face conversation, and find I’m uneasy.

Is this really what my life has come to? Something in me wants to hang on just a bit more, even though I know it’s time to begin letting go and shifting my attention and energy to what’s yet possible. On the other hand, who knows what Mt. Everest I’ll yet climb or even fly above in ways I never dreamed of.

Mary Oliver’s poem “The Kookaburras” has haunted me for the past week.

In every heart there is a coward and a procrastinator
In every heart there is a god of flowers, just waiting
to come out of its cloud and lift its wings.
The kookaburras, kingfishers, pressed against the edge of
their cage, they asked me to open the door.
Years later I wake in the night and remember how I said to them,
no, and walked away.
They had the brown eyes of soft-hearted dogs.
They didn’t want to do anything so extraordinary, only to fly
home to their river.
By now I suppose the great darkness has covered them.
As for myself, I am not yet a god of even the palest flowers.
Nothing else has changed either.
Someone tosses their white bones to the dung-heap.
The sun shines on the latch of their cage.
I lie in the dark, my heart pounding.

©Mary Oliver, New and Selected Poems, Vol. One, p. 87
Published by Beacon Press , Boston, 1992

That’s the challenge, isn’t it? The struggle between hanging on and letting go of what we were never meant to imprison. Not ourselves, not other people, and not kookaburras who just want to fly home to their river.

I want to let my spirit, my soul fly home. I also recognize the coward and procrastinator in me, wanting to say no, and walking away without unlatching the cage.

©Elouise Renich Fraser, 6 July 2019
Photo found at australianmuseum.net.au

The way from here

 

The way from here
Grows narrow
A finely chiseled path
From this life
To a world as unknown
As life beyond
The womb

When did birthing begin
And when will it end?

Wondering out loud
I search for midwives
To encourage me now
As in the past
How many and for how long
I cannot say
As I set out on another adventure
Another letting go
Another arrival
Somewhere
Into the waiting hands
And hearts of those
Who love me in life
And in death

How do we learn to die? How do we learn to give birth? How do we learn to say enough is enough? Or no, thank you, I’m not going to opt into our reigning medical model of trying whatever can be tried in order to live a bit longer. Comfort care is one thing; unrealistic hope for healing is something else.

My waking dream this morning led to the poem above. The dream suggested I need help, a midwife or two, to get through the last pieces of my journey on this earth. I might even need to become a midwife to myself. Not just by reading books, but by seeking out professionals to help me navigate what lies ahead.

I anticipate writing and talking about how this works out for me, and commenting on books I’ve been reading. My major guide will be a palliative care doctor I spoke with today. She won’t replace my other wonderful doctors. Instead, she’ll help me work with medical personnel, family members and others. I’m not willing to stay alive at all costs. So how will I get from here to there?

Today has been an up and down day. Lots of emotion about making the telephone call, and huge relief when the doctor said she would take me on. I know this isn’t a very popular topic. So I’m especially grateful if you’ve read to this point.

With hope, gratitude and a teeny tiny sense of adventure for what lies ahead,

Elouise

©Elouise Renich Fraser, 2 July 2019
Photo found at bastyr.edu

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