Tag: prayer

Hope, Life & Living, Love, Poetry

do you know the alzheimer’s alphabet?

My Alzheimer's Story

Being a dementia care partner has its ups and downs, and often carers seem to have a harder time of it than even those with dementia they suffer to love.

On the other hand, many of us find healing, love, compassion and even joy in our role as care partners. I created this tongue-in-cheek A to Z poem to mark World Alzheimer’s Day 2017, and to celebrate, encourage and connect with care partners everywhere.

I hope you enjoy it.

the alzheimer’s care partners’ A to Z

 

A is for Alzheimer’s, the disease we all hate
B is for bravery in the lives we create

C is for courage, compassion and care
D is for denial when life seems unfair

E is for energy to live day by day
F is for friends, and family and faith

G is for going with whatever the flow
H is for hope, and helping flowers to grow

I is for imagining your care partner’s shoes
J is for joy and not crying the blues

K is for kindness, kibitzing and kids
L is for love, and not flipping our lids

M is for music, and feeling half mad
N is for never letting things get too bad

O is for oxygen – put it on yourself first!
P is for patience that stops stuff getting worse

Q is for quiet we get when we pray
R is for respite and relearning to play

S is for sanity and preserving your own
T is the time before loved ones have flown

U is for understanding it’s not about us
V is for validation and how it’s a plus

W is for warriors, and finding your way
X is for Xtra, and vision X-ray

Y is for you and all that you do
Z is for zonked and needing a brew!

Click on the image below to dowload the PDF

© 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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Death & Dying, Life & Living, Poetry

10 more poems i didn’t want to write

My Alzheimer's Story


I have a love/hate relationship with writing. The bit I love best is being finished. The process, not so much. Maybe that’s why I’m writing lots of poetry lately — it often seems faster, and a little easier.

I once shared 10 poems I didn’t want to write; here are 10 more:

1) an endless prayer (February 2013)

2) enough time (April 2014)

3) i see you (May 2014)

4) a daughter’s prayer to god (May 2014)

5) dying with my mom (August 2016)

6) then and now, sacred cows (August 2016)

7) i didn’t know how soon you’d go (September 2016)

8) don’t rest in peace or sleep deceased (September 2016)

9) blessings and curses (December 2016)

10) truth or dare (January 2016)

 

©2013 – 2016 Susan Macaulay. 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.

Image copyright: tomertu / 123RF Stock Photo

Death & Dying, Life & Living, Poetry

let me weep

My Alzheimer's Story

No one escapes grief and suffering. But a good number of dementia care partners seem to have more than their fair share. Many are devastated by what they experience as the slow and cruel death of loved ones as they watch them disappear before their very eyes.

I’m fortunate to have never felt like my mom was disappearing, or that I had lost her, or that she was “a shell.” Rather, in some ways I felt she was more her true self than ever. So I didn’t mourn losing her as she lived with dementia, together we made the best of it. But I do mourn her death, maybe I always will.

Care partners express grief, mourning and loss in different ways. One of them is to cry. I’ve always been okay with tears, maybe because I’m well-practiced at crying, which I do randomly on a regular basis. I embrace tears no matter their source, just as I try to be fully present in all of my emotions–not always easy, but rewarding nevertheless.

This poem is about grief, sorrow and tears, and how sometimes it’s good to just let them be.

let me weep

© 2017 punkie

if i should cry
please let me be
it’s just the grief
you cannot see

a pit, a chasm
of black despair
in which i clutch
and gasp for air

the canyon widens
through my chest
its river a torrent
of waves and crests

please leave me here
awash in sorrow
and let me weep
until tomorrow

 

© 2017 Susan Macaulay. I invite you to share my posts widely, but please do not reprint or reblog or copy and paste my poems and posts into other blogs or social media without my permission. Thank you.

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

https://myalzheimersstory.com/2017/04/05/dont-mourn-me-long/

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Family, Life & Living, Love, Poetry

always mother and child

My Alzheimer's Story

This piece is inspired by an anonymous poem someone shared on Facebook and to which I added and subtracted to create something a little more poetic.

In the original, one phrase in particular struck me: “she is…even your first enemy.” I had a wonderful relationship with my mother. It was also not easy, which I wrote about on Mother’s Day 2012. I am my mother’s daughter: independent, strong-willed and determined. One of the gifts of Alzheimer disease was to provide me an opportunity to heal some of the scars that resulted from our rock-and-roll mother/daughter relationship. I’m grateful for that, and for the truth in the words below.

always mother and child

© 2017 punkie

Your mother is always with you.

She’s the whisper of leaves in the wind; their rustle underfoot on an autumn walk. She is the smell of cookies in the oven, the wet earth after a thundershower, summer flowers in bloom. She is incense in a sacred place, the fragrance of life itself.

She embodies the colours of the rainbow. She is the lullaby of a gentle rain rocking you to sleep. She’s the cool hand on your brow when you’re sick, warm arms around you when you cry, and the smile of shared joys. She is the promise of new beginnings at sunrise and gratitude at the day’s end.

Your mother lives inside your laughter. And you in hers. She is the place you came from, your first home, your last refuge. She witnessed your first step; she is the map that guides each of the millions that follow. She is your first love, your first friend, even your first enemy, but nothing can separate you: not time, not space, not even death.

She is your mother. You are her child. Always.

© 2017 Susan Macaulay. I invite you to share my posts widely, but please do not reprint or reblog or copy and paste my poems and posts into other blogs or social media without my permission. Thank you.

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Image copyright: jaysi / 123RF Stock Photo

Hope, Life & Living, Love, Poetry

the forgetful still want to be valued

My Alzheimer's Story

 

In March 2017, I gave my first four live BANGS(TM) mini-workshops. BANGS(TM) is the model that emerged based on my own experience of being a care partner to my mom who lived with dementia of the Alzheimer’s type.

The three days during which I delivered the sessions were fraught with technical issues, forgotten bit and pieces and the usual training challenges. At the end of each session, I felt grateful for the opportunity to be with and to be valued by other caregivers for the experiences we shared.

Also at the end of each of the fours sessions, I read “let me shine,” a poem I wrote to help counter the prevailing negative narrative and stigma associated with dementia and the people who live with it. When I got home tonight, I found this beautiful and similarly themed piece in my inbox thanks to Dementia in Dignity (enjoy):

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Care Partnering, Poetry

blessings and curses

My Alzheimer's Story

My Alzheimer’s story is full of sorrow, joy, love, healing, despair, grief and more. Each day is a roller coaster of blessings and curses – all to be lived, celebrated, overcome and finally surrendered when everything passes, as everything inevitably does.

This poem is about all of that. You may listen by clicking on the player and/or read below.

blessings and curses

a poem by punkie

great expectations tossed in the ditch
come hell or high water, life is a bitch

it fails to deliver what we expect
blessings and curses are all that we get

kittens and kiddies, ribbons and bows
sadness and pain, heart-wrenching blows

curses and blessings, the double-edged sword:
soar like an eagle, be somebody’s ward

we look to the heavens, fear fires below
pray up above is the place that we’ll go

blessings and curses, the two-sided coin:
unending pleasure, a kick in the groin

Jesus and David, prophets and kings
Mohammad and Buddha, and hymns we all sing

angels and demons in huge tugs of war
fashion the future, guess what’s in store?

curses and blessings, joy followed by woe
it’s important to learn to go with the flow

puppies and newborns or slaps in the face
in the hereafter, we’ll have it all aced

still in the meantime, life must be lived
blessings and curses, to each other we give

now ’tis the season, to decorate trees
open up presents, fall to our knees

curses and blessings up the chimney they dash
like prancer and dancer poof! gone in a flash

a new year will soon gladden our hearts
bring tears to our eyes, let fly cupid’s darts

more curses and blessings lie in the wait
being human, on earth, this is our fate

expect what you get, not what you want
put a spring in your step, walk with a jaunt

your curses one day will turn to delight
with blessings to all, and to all a good night

 

© 2016 Susan Macaulay

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/2015/12/23/an-alzheimers-dementia-christmas-story/

https://myalzheimersstory.com/2017/12/06/santa-claus-lives-with-dementia/

https://myalzheimersstory.com/2016/12/16/teepas-top-10-ten-holiday-tips-plus-10-more-from-me/

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Death & Dying, Life & Living, Poetry

don’t rest in peace or sleep deceased

My Alzheimer's Story

52504746 - mother and her daughter with umbrellas in spring alley

With death comes grief and letting go, but the loss is in us. The person who has died is no longer confined to this place and this space where we are limited by our bodies, our minds and the physicality of living.

This poem is about celebrating life and seeing possibility, even in death. It’s dedicated to my mom who lived with dementia and died, at least to this world, on August 17, 2016. Resting in peace wasn’t at all her style. Wherever she is, I hope she’s dancing a jig and being enveloped by love and joy.

 

don’t rest in peace

a poem by punkie

Click to hear me read the poem (or read the words below):

rest in peace, well-wishers say
but that’s not how I hope you’ll stay

i miss you, but i’m glad we’re free
from elder jail, and one to three

paradise has no locked doors
no one there will keep the score

they won’t scold you: “please sit down,
you might fall flat and break your crown!”

nothing good is disallowed
stuff that’s bad is disavowed

you can do just as you please
sip on sherry, not eat your peas

be as feisty as you like
stand up, speak out: fight fight fight!

golf and ski, swim in a lake
sleep in late for goodness sake

long gone are the aches and pains
the deadly drugs, the beeping chains

you can sing and rhyme and dance
archangels never look askance

leave behind death’s heavy shroud
skip to my lou amongst the clouds

try a two-step with some bear
like you did at the winter fair

water heaven’s windows boxes
watch birds and bees and little foxes

walk with rainbows in memory lane
touch the sky, embrace the rain

cuddle babies, delight in laughter
rock the world in your hereafter

reach down to me and take my hand
remember the words to mcnamara’s band

you’ll get to rap more irish tunes
fling and swing, bay at full moons

with friends and family all around
in a place where love abounds

the clock is on eternal time
each tick tock becomes divine

drink milky tea at endless parties
pop countless candy-coated smarties

throw caution to celestial winds
forget that you have ever sinned

god’s got your back, your front and sides
on one big long seraphic ride

stay awake, don’t sleep deceased
rejoice and savour sweet release

shoot fireworks with eden’s gang
march with saints, create big bangs

don’t rue the day you said goodbye
live it up, take wing, fly high

no more sorrow, instead you glow
your spirit soars, get up and go!

Here’s me reading it again for your listening pleasure:

Download a PDF of “don’t rest in peace.”

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

https://myalzheimersstory.com/2018/08/16/the-truth-behind-my-mothers-death-august-16-2016/

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

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Death & Dying, Life & Living, Poetry

i didn’t know how soon you’d go

My Alzheimer's Story

i-didnt-know-how-soon-youd-go-cropped

I was lucky to be at my mother side when she died on August 17, 2016. Many others are not as fortunate. Often people are wrenched from our lives brutally, without any warning whatsoever.

This piece is about death and grieving, and most particularly about the especially difficult grief when those we love are taken completely unexpectedly, leaving us without a chance to say a final goodbye. The poem, called “gone to soon,” is dedicated to people worldwide who have lost loved ones taken in tragic circumstances.

gone too soon

 

gone too soon

© 2016 punkie

had i known
i’d never hold
your hand again in mine
i might have felt more tender when
our fingers intertwined

had i guessed
you’d leave this world
before the night flights fly
i might have touched the peaceful soul
behind your sky blue eyes

had i divined
this time would be
the last for gifts in kind
i could have offered painted wings
to please our whimsy minds

had i thought
your breath would stop
before the day was over
i might have wished upon a star
or plucked a four leaf clover

had i gleaned
death’s hasty scheme
i would have been close by
to whisper clear: “your time is here,
let heaven be your guide”

if i’d surmised
the moon would rise
without you in this world
i would have prayed and longer stayed
to watch your flag unfurl

had i believed
you’d choose to leave
heading homeward bound
i could have sung a final song
in which we’re lost and found

if i’d supposed
this door you’d close
before we’d had the chance
to say goodbye with tearful eyes
we’d have had just one last dance

but i didn’t know
how soon you’d go
a lifetime’s not enough
the days we’re leant too swift are spent
on fears and things and stuff

i think of how
it once was now
not past or future tense
when time stood still, a skylark trilled
and grief was not a fence

so here I mourn
my soul is torn
recalling times we had
walking free, across the sea
i can’t help feeling sad

today it dawned
the sun’s rays shone
to honour all we’ve lost
the gifts we got, our lives to plot
no matter what the cost

tommorow’s hope
is in my scope
my spirit soldiers on
with purpose strong to right what’s wrong
then I too, soon will be gone

 

Please also see: dying with my mom, homeward bound, night flights to london and dead mom talking.

© 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.

Subscribe to my free updates here.

Copyright: antonioguillem / 123RF Stock Photo

Death & Dying, Life & Living, Music, Poetry

homeward bound: poetic grief and hopeful song

My Alzheimer's Story

160902 homeward bound

The vapour trails are scarcely visible in the image above, but they were as clear to me as the tattoo in the palm of my right hand as I watched these travellers cross the late summer sky less than three weeks after Mom died on August 17, 2016. Moved beyond measure in my grief, I composed the poem below in tears, just as I had when its mother (night flights to london) had been born  two years earlier. And then when I found the tune at the end? Well, just listen for yourself and see what happens…

homeward bound

a poem by punkie

my heart sails like
two flights at night
with vapour trails:
one pink, one white

you left me here
an orphan now
this bit you never
showed me how

sure you’d be gone
but why’d you leave
without some guide
on how to grieve?

you birthed me fine
and then you died
a lifetime scarce
to say goodbye

it seems unfair
that you should fly
and leave me here
alone to cry

i watch the jets
to london soar
while emptiness
fills up my core

then i recall
how once we ran
and fell in heaps
upon the sand

thank you for
those magic times
the love you spread
the nursery rhymes

i miss you as
i watch the sky
turn sunset into
stars that shine

one day soon when
the moon is round
instead of lost
i will be found

mothers daughters
become just one
and rest entwined
when life is done

here with me
sweet the sound
as angels sing us
homeward bound

 

Homeward Bound
by Marta Keen

In the quiet misty morning
When the moon has gone to bed,
When the sparrows stop their singing
And the sky is clear and red,
When the summer’s ceased its gleaming
When the corn is past its prime,
When adventure’s lost its meaning –
I’ll be homeward bound in time
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow
If you find it’s me you’re missing
If you’re hoping I’ll return,
To your thoughts I’ll soon be listening,
And in the road I’ll stop and turn
Then the wind will set me racing
As my journey nears its end
And the path I’ll be retracing
When I’m homeward bound again
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow

© Susan Macaulay 2013 – 2015. 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/2016/09/11/i-didnt-know-how-soon-youd-go/

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

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Death & Dying, Life & Living, Poetry

then and now, sacred cows

My Alzheimer's Story

20841694 - holy indian cow silhouette in old temple arch at dramatic orange sunset sky background

 

This poem in rhyming couplets, and the links within it, reflect the past, the present, and the future.

 

then and now, sacred cows

a poem by punkie

 

azure skies
days gone by

cotton clouds
sing aloud

hummingbirds
cheep warring words

a summer breeze
stirs christmas trees

mothers’ daughters
pray don’t falter

painting nails
in elder jails

planes above
trace expat love

nursery rhymes
recall old times

sooth elder sighs
with lullabies

birth tender joys
with children’s toys

cut wild flowers
in thunder showers

or dance a jig
with jillian’s pigs

sip sweet wine
drink poison brine

resist the drugs
doled out by thugs

pious sows
and sacred cows

shame on one
begotten son

hear death rattle
in final battle

sucking air
cold despair

breathe in shallow
fallen sparrow

eyes tight fixed
on pick-up sticks

light and free
at half past three

split lies asunder
six feet under

eternal rest
hole in my chest

tears like rain
to ease the pain

heaven hails
evil fails

the ghostly pale
tell tattle tales

hope arises
life surprises

broken hearts
find brand-new starts

 

© Susan Macaulay 2013 – 2015. 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.

Subscribe to my free updates here.

Copyright: byheaven / 123RF Stock Photo