god – My Alzheimer's Story

eternal anguish

April 27, 2019 My Alzheimer's Story

At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.

This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.

eternal anguish

please take her lord,
oh no not yet!
i’m afraid
i might forget

how she smiles
and laughs and cries,
it’s not the time
to say goodbye

but I can’t bear
to see her so
perhaps today
is when she should go

is it selfish
when i wonder
how long before
she’s six feet under?

oh my god
don’t take her now
no, this can’t be
her final bow

let us play
another scene
in which she doesn’t
lay serene

a corpse upon
a broken bed
that’s not my mom
she can’t be dead

she’s the one
who gave me life
who saw me through
both joy and strife

don’t take her god
i need her here,
by my side
forever near

i promise lord
that I’ll be good
and do exactly
as I should

i won’t lie
or kill or loot
or disrespect
an older coot

i’ll love my neighbour
guaranteed
if only you will
set her free

to dance and sing
like we once did
when I was no more
than a kid

please don’t take her
oh no please don’t
i wish you would,
and that you won’t

i know deep down
it’s peace she seeks,
every day
week after week

she craves her home
amidst the stars
her life beyond
these prison bars

but when she breathes
in fits and starts
who will call
the funeral cart?

in this game
where life’s at stake
we’re helpless
to decisions make

it’s in your hands, god,
you call the shots:
undo this heart
tied up in knots

around the rosie
we will sing
lord have mercy
you are the king

a daughter’s prayer to god

don’t mourn me long

dying with my mom

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Poetry

we too are one

April 27, 2016August 30, 2021 My Alzheimer's Story

This poem wrote itself in a few minutes, as some do. Others take what feels like an eternity to be born as they cut, scratch and bleed themselves into life.

The choice of image was both accidental and deliberate; it is the infinity symbol, sometimes also called the lemniscate, to which I applied a “chrome” effect using photoshop that makes it look, at least to me, like an otherworldly guise from a masquerade ball.

In case you’re wondering, the spelling of “too” is also accidental, deliberate and perfect.

Finally, I firmly believe we remain spiritually connected to the ones we love whether they recognize us in this world or not.

we too are one

by punkie

i hope i will remember you and

the look on your face
when you spot me
across the table
your fingers
fluttering
your mind
trying to find
my file amidst all
the others in disarray

i hope i will remember you when

you held my hand tho you
could not quite grasp
who i was or am in
the moments of
time i want
to capture
and embed
somewhere safe
and secure like a life
should be but clearly is not

i hope i will remember you as

the feeling i had when you
looked up and finally saw
the me you knew, then:
“are you my baby?”
you asked and
i said “yes”
freely after
denying it hard
for solitary and tender
years as i struggled to be
more separate when actually
we never can be discrete, can we?

perhaps that’s why i hope i will remember you

even as this broken heart mourns that one
day i won’t, and while you have let me
go we remain so entwined that our
living souls are at once together /
apart in ways i can’t fathom but
which cause me curiously to
gnaw on the mystery of
flesh and blood and
death and dying
knowing both
you and i
always
were
one

© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

https://myalzheimersstory.com/2018/09/15/ascendants-awakening-to-where-and-whom-we-came-from/

https://myalzheimersstory.com/2016/12/14/missing-you/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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Death & Dying, Life & Living, Love, Poetry

a daughter’s prayer to god

April 7, 2016June 7, 2017 My Alzheimer's Story

Renee James and her mom — Ella Fae James (January 19, 1930 – June 25, 2015) and her daughter Renee James pictured together in 2013

This poem is inspired by the struggles of compassionate children, especially daughters (of which I am one) who care for others who live until they die with a terminal illness such as Alzheimer’s disease and other forms of dementia.

I wrote the poem, but it doesn’t belong to me. It’s the collective voice of grieving millions. It belongs to all of us.

Each word is dedicated to every care partner who is torn to pieces, and in particular to Renee James and her mother Ella Fae James (January 19, 1930 – June 25, 2015) who are pictured at the top of this post.

a daughter’s prayer to god

by punkie

dear god

please take

my mother

now and

never

i can’t bear to see her

suffer anymore

nor can I bear

to see her

mothers and daughters

are sometimes

swallowed up

by life

god

we push hard and

then we pull,

trying

to fight

our way

to détente

then sometimes, god

dis-ease finds us

first and

makes us

blind, unaware

it steals the

things we

hold dear:

thoughts

actions

words

deeds

and dignity

please tell me

what happened

to dignity

god

is it stuffed in your

back pocket like an old

grocery list with

a nameless

phone number

scribbled on the back?

is it what i hear

a lonely elder

choking on

unseen in

over there in

a reclining chair?

go away god

if you can’t

keep track

of the notes

in your pockets

or the glory in the

everlasting corners of

your kingdom

come

no wait!

forgive me father

for I have

sinned

take her now

all these bits and pieces

and fragments of

your daughter

who was once

my mother

pluck her quick

from this drug-

induced

trance

breathe her back to life

on the other side

let her sing and dance

with the angels

instead of

free her spirit from

the tangled mind

the breaking body

the unholy care

that imprison

her now

then again,

bide your time:

a sedated slumber

may be better

than a

final resting

place where

I cannot see

her face or

hold her hand

how can her life

end as mine began

with dirty diapers

tentative steps

gurgles

drooling and

the search for

unknown words

and meaning?

don’t take her now,

god,

don’t.

take her.

i will miss her

too much when

she goes.

leave her

hand in mine

we can shuffle

a little further down

hell’s road to

heaven

we can play a duet

or two, or three

or more

i can read her stories

touch her cheek

watch over her

as she did me

when I was

her baby

and she

was not

mine

let her stay with me

a little longer

god

before you

take her home

where she longs

to go

and when you

take her

god,

don’t take

all of her.

don’t take everything.

leave a piece

of her within reach

to accompany me

as I have

her

take her now god

but don’t take

her ever.

i will

miss

her

© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

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Hope, Love, Music, Spirituality

give me jesus on the line

March 30, 2015April 9, 2018 My Alzheimer's Story

March 26, 2015.

I get Mom settled on the sofa.

“That’s going to be nice eh Sue?” She says. “Is it going to be nice the last one?”

“Yes, it will be,” I reply. Her words remind me there’s something important I want to say. I take her hands in mine. “Mom, I want to tell you something,” I begin. “Just in case something happens and I can’t come to see you, don’t worry about it OK? Her eyes lock on mine. All of sudden she is completely focussed.

“Oh,” she says low and quiet.

“It’s not because I don’t want to be here. Somebody might stop me from coming to see you,” I say.

“Is that right?” Here voice is even softer and lower now.

“Yeah.” I affirm.

“Like who?” She asks.

“I don’t know Mom,” I lie. “But I just wanted you to know that if it happens, if I don’t come, it’s not because I don’t want to.” My voice cracks. Tears threaten.

“No, I know,” she says. “I know. I know it’s not want to.” Bits and pieces get lost on the way from her brain to her mouth. But she has divine help getting her message across.

“I don’t want you to want the the the thing,” her words skip and stumble in a dementia rush. “You know…because it’s not my thing. And I don’t like things like that.”

“I know Mom,” I try to comfort her despite my fear and despair.

“I don’t like it like it…I I I I just don’t like it. Because it belongs to the the the the the…. It belongs to…. It belongs to the person it belongs to.” She’s hit the nail on the head. “And I remember that that remembrance. Near that person I have to… I feel that it’s right or wrong, you know. I don’t want it to be a wrong thing. It won’t change any way at all,” she continues. “It’s not going to change anything. Because it’s all, it’s all, it’s all the things. It’s the singing of everything.”

It’s the singing of everything. The totality is meant to be. There’s purpose behind the pain. Her wisdom sometimes blows my mind.

“I just wanted you to know Mom. I didn’t want you to be upset or anything,” I say.

Click on the player if you would like to hear the full unedited audio version of the conversation. It’s about eleven minutes long.

“No, I didn’t want to be upset. You know that,” she says.

“I know but I wanted to tell you in case you don’t see me that it’s not because I didn’t want to come Mom,” I repeat. I know in her core she will understand why if I never see her again in this life.

“We know that Sue. We all know that.” Her voice is firm and strong. It gives me hope.

“So we have to make the most of the time we have together, Mom.” I squeeze her hands a little for emphasis.

“That’s right. That’s right. We have to get the silver sign. And that’s got to be signature. That’s it,” she says.

“Yes,” I say.

I’m glad I’ve told her. As crazy as it may sound, she knows stuff, even though she has trouble articulating the depth of her understanding. She knows.

“You’ve been out running the roads this morning,” she observed the other day.

“You’re right Mom. I have been. I had to do some shopping,” I laughed. “How did you know? How do you know these things you have no way of knowing?”

She looked me straight in the eye and spoke her truth: “The Lord tells me,” she said.

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