feelings – My Alzheimer's Story

do you know the alzheimer’s alphabet?

September 21, 2017September 25, 2017 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.

Subscribe to my free updates here.

Death & Dying, Life & Living, Poetry

let me weep

May 19, 2017October 30, 2018 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

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/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: semolina / 123RF Stock Photo

Family, Life & Living, Love, Poetry

always mother and child

May 14, 2017May 14, 2017 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

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.

Subscribe to my free updates here.

Image copyright: jaysi / 123RF Stock Photo

Hope, Life & Living, Love, Poetry

the forgetful still want to be valued

March 23, 2017July 26, 2017 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):

Subscribe to my free updates here.

Death & Dying, Life & Living, Poetry

don’t rest in peace or sleep deceased

September 26, 2016August 17, 2018 My Alzheimer's Story

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/

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Death & Dying, Life & Living, Poetry

i didn’t know how soon you’d go

September 11, 2016April 20, 2017 My Alzheimer's Story

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

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, Poetry

Mary Patricia (Patty) Macaulay: Obituary

August 24, 2016August 25, 2016 My Alzheimer's Story

Mary Patricia (Patty) Eustace Macaulay; September 27, 1928 - August 17, 2016. Pictured here in summer 2011. — Mary Patricia (Patty) Eustace Macaulay; September 27, 1928 – August 17, 2016. Pictured on her back deck summer 2012.

Mary Patricia (Patty) Eustace (married name Macaulay) was born September 27, 1928; she died August 17, 2016, in North Hatley, Quebec, with her daughter Mary Susan by her side. She is also survived by her son Robert Edward (Dominique Séguin), grandchildren Émilie and Nicolas, and her cherished brother, Edward. A devoted mother and grandmother, Patty was proud of her children and even more so of her grandchildren whom she adored. It’s a comfort to know that Patty has gone home to be with her mother Mary Margaret Kell Eustace, her father Edward Stephen Eustace, and her sisters Jean and Leona, all of whom she loved dearly.

Patty was a highly respected realtor who specialized in property on Lake Memphremagog and environs for thirty-five years. She was an avid skier and golfer; she taught the former for several years at Mount Orford, and was a longtime member of the Hermitage Club, where she was twice the Ladies’ Golf Captain.

Beyond being a great mother as well as a successful business and sportswoman, Patty was active in the local community, particularly with respect to environmental issues. She was involved in fundraising for La Providence hospital among a wide variety of other activities. She passionately embraced causes she believed in, and was a formidable advocate. Generally, you didn’t want to mess with her. The epitome of a “people person,” Patty loved to sing and dance and was the life of most parties she attended, including the dozens she hosted at Ives House, her heritage home on the Georgeville Road. She was beloved by many and had a wide circle of friends and acquaintances, and a loyal clientele comprising both regular and famous folk . She collected antiques, relished planting and harvesting her vegetable garden, and enjoyed swimming in the lake. She was beautiful, stylish and fun. She also baked a mean blueberry muffin.

Living with Alzheimer’s disease did not diminish Patty’s fierce spirit. She was a force to be reckoned with, and she maintained her “let’s get going” attitude and natural ability to connect with others in meaningful ways despite her dementia. She made the most of her circumstances, whatever they happened to be, and inspired others with her courage and determination. Supported by those who cared deeply for her, she lived a full, vibrant, engaged and rich life until the day before her last breath.

Patty made a difference in this world, and impacted the lives of countless people. She will be missed by those who love her. If you feel inclined to honour Patty with a financial contribution of some kind, please give to the Alzheimer’s Society (Canada), Alzheimer’s Association (USA), Alzheimer’s Society (UK) in her name and mine rather than to a private foundation. Thank you.

Please also see:

© 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.

Death & Dying, Life & Living, Poetry

dying with my mom

August 20, 2016August 17, 2020 My Alzheimer's Story

My mother died on August 17, 2016. Like all deaths, hers was paradoxically unexpected. I didn’t want her to die. I knew she couldn’t live forever.

I had been thinking/fearing/anticipating/regretting/hoping for her death for months. I didn’t want to be there. I had never been with someone while they were actively dying. What would it be like? How would she be? What would I do? How would I feel? Would I be brave enough to watch her go?

At the same time, I desperately wanted to be there, alone with her, when she “went.” After a decade of being her care partner in various ways , I wanted to share her last moments/passage/death/birth/transition. It would be a crowning act of intimacy in the circle of our lives: she had been present when I took my first breath; it seemed right I should witness her last.

This poem is about our final moments together in this life/space/place. Being with her was a gift, a blessing and privilege I couldn’t have imagined. I’m so thankful it happened as it did.

here we go

Listen here:

here we go

a rasping rattle
in your chest
takes me by surprise

i thought we’d have
more time to share
before our last goodbyes

you suck the air
i stroke your hair
and hold your hand in mine

oh-two pumps in
your nostrils thin
your nose is cold and white

your eyes unseeing
and human being
will soon be left behind

“i love you mom,
go home,” i say
your answer is divine

compassion deepens
in changing seasons
i urge you to move on:

“gran awaits
at heaven’s gates
it’s time now to be gone”

your breathing slows
my love still flows
i hope you see the dawn

your heart is still
my tears now spill
your skin grows pale and wan

a body lays
where once you played
not hither now but yon

i cry alone
stripped to the bone
i miss your voice in song

pray look for me
one day to see
we’re not apart for long

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

https://myalzheimersstory.com/2015/09/03/night-flights-to-london/

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

https://myalzheimersstory.com/2016/09/03/homeward-bound-a-grieving-poem-and-a-hopeful-song/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: andreacrisante / 123RF Stock Photo

Death & Dying, Life & Living, Poetry

the turnstile

August 12, 2016February 19, 2020 My Alzheimer's Story

I was struck by the beauty and wisdom of these words by Gwyneth Walne who responded thus to 7 ways to honour living and dying with dementia:

“A peaceful and respectful death is the greatest gift one can give to a fellow human being. it is perhaps the most honourable thing a person can do. it’s not about money or status; it;s about the joy of being alive and the sheer wonder of life’s rich tapestry. What comes next none of us know, but we are all going so let’s make it special and personal.”

The poem below was partly inspired by Walne’s quote; it’s about the pain and anguish as well as the hope of being at the side of someone you love as they transition to another place.

the turnstile

a poem by punkie

you never know
what you may find
you wake to learn
you’ve lost your mind

bloody bruises
broken arms
does death await?
or other harms?

try to comfort
hold limp hands
lose your way
in shifting sands

close your eyes
sleep awhile
ask some god
to turn the stile

bitter twisted
hidden lies
break and bleed
when people die

seek the light
pray for rain
flee the deadly
knife of cain

greener grass
the other side
rainbows arc
in bluer skies

forests deep
say come to me
o’er the fence
and there you’ll see

truth is spoken
by the brave
blessings sing
beyond the grave

See also: once a dancer

© 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/2017/04/05/dont-mourn-me-long/

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

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

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Hope, Life & Living, Love, Poetry

let me shine: a dementia rhyme to open minds

July 24, 2016August 24, 2019 My Alzheimer's Story

I believe we must change the way we see Alzheimer’s disease and other forms of dementia and the way we interact with people who live with dementia. Why? Because a change in perspective is essential if we are to provide better, more efficient, more effective and most important, more compassionate care that helps people to really live until they die.

I believe we need to look at people who live with dementia as people who still have potential, not as “shells” of their “former selves.” To change our perceptions we need to change our words, our language, our actions and our interactions. I advocate on all fronts.

I understand how many people feel Alzheimer’s disease robs them of their loved ones, and I get how they are devastated by the disease and by loss they experience. But feeling that way does nothing to help people who live with dementia to continue to engage with life and love and the world around them.

Posts and poetry that focus on loss, grief and gloom abound; here are two stanzas from a piece entitled An Alzheimer’s Request:

I’m confused beyond your concept,
I’m sad and sick and lost.
All I know is that I need you,
to be with me at all cost.

Just remember that I need you,
that the best of me is gone.
Please don’t fail to stand beside me,
love me ‘til my life is gone.

Words like these perpetuate the myths we have about Alzheimer’s disease and other dementias and result in people who live with dementia being treated in ways that demean, exclude and isolate them. The words become self-fulfilling prophecies. Everything becomes dark, tragic, and devastatingly sad. But life itself is multi-dimensional. Nothing is all good, or all bad.

In the spirit of balance, I offer a different view inspired by dementia care pioneer Teepa Snow’s GEMS(TM) model. Listen here and/or read below:

Download a PDF of the poem “let me shine”

© 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/2017/07/13/confused-not-clueless/

https://myalzheimersstory.com/2017/06/20/the-demented-system/