the Decision - a very long poem

My mother died from breast cancer one year ago. This is a poem I wrote not long afterward.

the Decision

How do you decide when?
How long is long enough?
When do you stop trying,
and let nature run its course?
For every step forward
she fell further back,
and we knew
the decision
was imminent.
The most difficult decision
anyone will ever have to make.

I'm being vague
and I know that's the death
of a poem, talking about
not showing.

Let me try
to give you a picture:

it started with wheezing,
as she stepped up the curb
to go into the hospital
to visit daddy,
who was lying attached to tubes
machines pumping
air into his lungs
food into his stomach
medicine into his veins
piss and shit into bags.
He was sedated
so he could "rest"
and tied down
so he wouldn't
unplug himself,
Swollen like
the balloons
in the Thanksgiving day parade
that he slept through.

We thought it was a cold.
I had a cough, too.
We were all stressed.

Two months later,
he was home,
barely able to stand
but still having to
wash the dishes
because she
was wheezing
He must have known,
really. I think he knew.


There I go, being vague again.

OK. Another picture.

She's showing me her bone scan.
She smiles.
She says she thought
all the bright spots
were cancer,
but it's only these.
Pointing out which
bright spots
are arthritis
and which
are cancer.

I know my mother.
This is her brave face.

It's in both lungs.
It's in the a remote site.

But it's not until she says this:
"Stage IV"
that she cries.

Saying it, it sinks in.

We are alone,
a rare thing –
she always has visitors.

I hold her,
my hand on her head,
feeling her tangled bed-hair
(I'll have to brush it)
I pull her gown together
in back, so she won't
moon anyone coming by.

We are sitting beside each other
on the bed.
She can still sit,
though standing
makes her pulse crash.

We look at the flowers
set in the window.
The stuffed giraffe
her "adopted" daughter brought.

She tells me –
when she was in the support group
during chemo
(nine years)
they wanted to have a separate group
for those with metastasis,
but she (my mother) insisted
that all of them
needed to hear
needed to know
needed to see
because it could be
any of them one day.

Stage IV
She knows, better than I do,
that this does not mean if,
but when.
Not better,
but how many months.
(average 16-24,
with better chances
if the disease is contained to
a single site,
which it was not.)

But there was
hope – it could me five years.
New drugs,
the one whose name
sounds like a barbarous word of evocation,
the one the doctor
said was a miracle drug:

So we made plans.
breakfasts on the front porch
dinner parties
walks in the park with the dogs

and that vacation to Cancun.
Asked my best friend
how many people
could stay in his timeshare.
Looked into the cost
of a flight.

Of course,
it would have to wait
'till the chemo was done.

Looked at scarves
for her head,
found a chocolate-colored
velvet one
I wanted to give her
for her birthday…
she would need it by then.

Then one morning
she couldn't breathe.

Same as my dad.
But alert.
With the tubes,
and wires.
The whirr of machines,
the beeping of monitors.
Hooked up.

The nurses said,
"I'm so sorry,"
because they knew us,
knew her.
After all,
we'd spent a couple of months
here already.

Do you know what it means
when they come and close
the doors to all the rooms
while you're visiting?
Peek out the blinds,
and watch them wheel
someone away,
face covered.

But see, she was alert.
And we still had hope.

Visitors. Laughter.
Careful questions,
how was my father's heath, really?
how were we doing, financially, really?
how were we holding up?
The answer to all three:
getting by.
You find a way,
because you just have to.

And she became frustrated,
wanting the tube to come out
so she could talk,
really talk,
to us.
As her hands swelled, and
her arms atrophied,
it became harder for her
to even write messages.

So much can be said with the raise an eyebrow.
and So much cannot.
She wanted the tube out so she could talk to us.
But even a minute without it,
and her oxygen levels
They discussed a trach,
but her heartbeat
had become unstable
(a rare complication
from the miracle drug)

I knew her. And I saw,
before anyone else.
She was starting to give up.

She stopped
doing her exercises,
her circulation
her bright moments

I love my mother,
but she was not a fighter…
well, not on her own behalf
(though plenty if it were
one of us)…

and she started to,

Swelled up,
so bad,
you could touch her hand
and it would leak
clear lymphatic fluid
out of the pores.

A lung tube for the fluid,
draining pink and yellow
into a box.
Beside the bags of piss
and shit.

Her pain increased,
her lucidity faded,
it was not long before
she was sedated.

And I hadn't had a chance
to be alone with her again,
and ask her
what she wanted us to do
if we had to make
that decision.

I knew it would come,
and no one else had thought about it

I was afraid to ask,
afraid of putting dark(er)
thoughts in her mind.

And then the doctors suggested
she might not ever leave
the ICU.
It made my father angry.
It made my sister cry.
My brother hid his feelings.
But I knew already.

So I asked the hard questions.
Life insurance, the will, "options."

Daddy knew what I meant, and said
it was too soon…
but a week later, he knew
we might have to make that decision.
We signed the orders.
The first time around,
they had discussed it.
So I felt OK about
the DNR.
Comfort care.
Keep up the drugs,
and the machines,
but don't stop arrest.

She became fragile.
They couldn't even turn her,
her heartbeat
would become chaotic.
So her bedsores worsened,
skin splitting open beneath her.

I was glad she was sedated.

And nothing was making her better,
every day a little worse.
Every treatment a new complication.
And she had to be in pain,
somewhere deep in there,
under the medication.

She no longer
even fluttered her eyes
to the sound
of my voice.

They asked
how long we wanted
to continue treatment.

That was it.
The decision.
How long do you continue
chasing away thanatos,
and when do you let nature
take its course?

We told them not yet…

and she held on
for their 37th,

and then started
slipping away,

heart rate slowing
to almost nothing.

I was at work,
and was told
I needed to come.

It was time.

I delayed.
They called again.

I said, OK.
Go ahead.
I will be there soon.

They turned off the machines.
Stopped all drugs
but the lortab.

And when I arrived,
there was only a wisp
of life

We felt like we should
be there, at her side,
when she passed,
but I was frightened
of how it might be,
the body's last gasp.

We went to lunch.
And she died while we were gone.
I think she chose it.

We returned,
and sat with her body,
in the room.
Her husband,
and all of her children,
including the "adopted" one.
We looked at her,
we made arrangements,
we remembered
and we laughed.

Until it was time to leave.

How do you decide when
to let someone you love
die? It's impossible,
and yet,
you find a way,
because you have to.