Life & Living, Love, Poetry

so what if santa has dementia? he’s still the same ole claus he used to be

Unbeknownst to most of the world, Santa was diagnosed some time ago with Alzheimer’s disease. Luckily, he has a great support system at the North Pole, and Mrs. Claus knows exactly what to do to keep him engaged with life, as well as to ensure that he’s healthy and happy. We could all benefit by following Mrs. Claus’s good example.

Whatever we believe is real.

santa claus lives with dementia

by punkie 2017

Listen here:

Read here:

“alzheimer’s it is”
the doc says to the clauses
“no cure in sight,
and no clue to the causes

“write your will, take a pill,
give in to your fate
there’s nothing to do
with this disease we all hate”

but the clauses aren’t ready
to throw in the towel
they decide to live on
even if cheek by jowl

the mrs. she knows
it brings santa great joy
to distribute fun gifts
to the world’s girls and boys

she assembles the team
the deer and the elves
“we need to help Santa,
he’s not feeling himself”

“he worries dementia
may cause him to lose
the man he is now —
not to mention his shoes!”

“i want to give meaning
to the life he’s now leading
you’re his friends, ’til the end
for your help i am pleading.”

mrs. clause is no fool
she knows he will change
so she learns how to care
and avoid feeling deranged

she takes deep yoga breaths
in and out, one, two, three,
she gets him to bounce
little kids on his knee

she agrees with her husband
even when he is wrong
defuses tough times
by singing him songs

she never will argue
no, that would be stupid
instead she heaps on
stuff delivered by cupid

to go with his flow
is always her goal
‘cause deep down inside
he’s still the same soul

if he gets angry,
which sometimes he does
i’m sorry,” she says
“i must be the cause.”

these simple ways
are true magic tricks
make it easy as peasy
to engage with st. nick

and the coolest thing is
that by giving more hugs
santa’s wife keeps her husband
off all those bad drugs

it allows him to function
to not go berserk
which in turn makes his wife
want to stand up and twerk

mrs claus is so grateful
she allows me to quote
the model that keeps
the clauses afloat:

these bangs are the best
way forward to glean
skills to stop me and he
from causing a scene!”

the elves and the deer
are in on the game,
their part is designed
to stop stigma and shame

though he often forgets
and becomes more confused
life’s ups and downs
keep santa amused

he works in the shop
tiny elves by his side
it helps him feel useful
and nurtures his pride

they buoy up his spirit
give esteem a big boost
stop fear and depression
finding somewhere to roost

and then on the eve
of the christian big day
rudolph the red
is in charge of the sleigh

they fly through the sky
every year without fail
dementia or not
with the wind at their tail

if the clauses can to it
ho ho so can you
make the best of the worst
by changing your view

seek blessings not curses
in life’s wildest ride
hold a hand, still your heart
let love be your guide

be like santa: believe
you have what it takes
to make every day christmas
when despair you forsake

 

©2017 Susan Macaulay. 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.

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Advocacy, Life & Living, Poetry

dementia caregivers: a poem

I didn’t want to leave my comfortable life in Dubai to come back to Canada to care for my mom. It was a role I wasn’t trained for, hadn’t expected and was comletely ill-equipped to perform. But, like many care partners, I felt I had no choice. In the end, it became one of the most rewarding things I could have done at that point in my life. The hardest thing, and the best thing. A paradox.

dementia caregivers

This poem is dedicated to dementia care partners everywhere.

©2017 punkie

dementia caregivers

like frogs in a saucepan
they don’t notice the heat
they run round in circles
without skipping a beat

wake up early morning
don’t sleep well at night
cook, clean and cajole
and fight the good fight

few make the choice
they’re drafted instead
into roles that everyone
can’t help but dread

a loved one is helpless
what else can they do?
but dive in the water
despite having the flu

are you my daughter?
where is my friend?
i want to go home
let me out of this pen!

continual questions
impossible pleas
cause dementia caregivers
to fall on their knees

day after day
then year after year
they pray for a break
and then shift into gear

why? you might ask
do they do what they do?
this unending work
which may involve poo!

when you ask you will get
the same answer from many
it’s not for the money
’cause they don’t earn a penny

love is the reason
they give up their lives
for mothers and fathers
and husbands and wives

they couldn’t abandon
someone that they love
anymore than the sun
could stop shining above

then one day comes
when loved ones must go
rescued too fast from
a death that is slow

and so they are left
with hearts full of holes
grieving the loss
of their caregiving roles

©2017 Susan Macaulay. 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/2014/07/13/an-open-letter-to-everyone-who-knows-what-i-should-do-before-i-ask-them/

https://myalzheimersstory.com/2016/02/18/dont-give-advice-to-people-who-are-drowning/

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Advocacy, Life & Living, Poetry

when you’re put behind bars

November 16, 2017: In a strange moment of foreshadowing, I took this picture of Mom and I staring into the mirror in the hallway of her big red brick house on the hill on November 14, 2012 . It wasn’t at all planned to feel like this, but whenever I see this picture I’m shocked at how it looks like we’re in a prison of sorts. Two days later, we kidnapped Mom and took her to #DementiaJail, where we both ended up behind invisible bars in a very real prison of sorts.

behind bars

©2017 punkie

behind bars

there we stood
between the bars
before our hearts
got jailed in jars

we didn’t know
what fate had planned
we thought it was
the promised land

but one blind eye
the gods then turned
and caused our world
to crash and burn

it’s hard to know
how love survived
as evil plotted
our souls to deprive

we fought each day
with all we had
but things got worse
that started bad

they gave you drugs
against your will
to make you sleep
and keep you still

when your gait
became unsteady
they had excuses
at the ready

“that’s what happens
as things progress,
we can’t do more
we should do less!”

you tripped and fell
were black and blue
begged and cried
please save me sue

i tried my best
from morn ‘til night
vowed to not
give up the fight

but thirsty power
craves control
demands a price
exacts its toll

with legal ropes
my hands were tied
they stole our hope
in court they lied

but greed will
never win the day
we laughed, we sang
and music played

too soon you left
for better places
where flowers bloom
in open spaces

now you dance
on heads of pins
no earthly body
no fear, no sin

death has freed you
from the night
it gifted you
eternal light

here’s to no more
bars or jails
or nursing homes
that #epic #fail

 

©2017 Susan Macaulay. 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.

November 16, 2016:

https://myalzheimersstory.com/2016/11/16/the-day-our-best-wasnt-good-enough/

November 16, 2015:

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

November 16, 2012:

https://myalzheimersstory.com/2012/11/16/moving-day/

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Inspiration, Life & Living, Love, Poetry

all fixed up: a lighthearted ode to our broken bits

The problem with overvaluing perfection is it sometimes leads us to want to fix things that don’t need repair, or to think that people and things are broken when in fact they’re not.  I believe people who live with dementia remain whole in their souls. So do the rest of use even as we change and evolve. This poem is about that. Just for fun.

all fixed up

Dedicated to the broken bits that needn’t be repaired.

all fixed up

©2017 punkie  

our stories lie in fragments
like our fractured selves
could they be assembled
by santa’s little elves?

or maybe fairies in the spring
will put us back together
like a cobbler works boot magic
with italian leather

perchance a layer of red bricks
would stack up all the blocks
slather mortar in between
while antique clocks tick tock

a seamstress would repair the tears
with thread and crossing stitches
lay them smooth upon a board
then iron out the glitches

a surgeon she could operate
cut, excise and sew
transplant better body parts
and hey, we’re good to go!

perhaps a quilter with a needle
should join up all the patches
in a crazy random pattern
where nothing ever matches

a coach might tell us how to do
say rah rah what’s your plan?
don’t worry if you trip and fall
god knows you’re greater than

yo we could go for therapy
pay it by the hour
turn bittersweet the notes we thought
only tasted sour

mechanics they could change our oil
while we lie high on lifts
tinker with our underbelly
tune us up in shifts

docs and nurses dole out pills
we could take our pick
problem is, the medicine
makes us feel more sick

teams of techies we might hire
divide them into crews
nothing but the cream of the crop
a fixer-up who’s who

or maybe we’ll just stay broken
it’s really not that wrong
to be a little cracked and bent
what matters is our song

©2017 Susan Macaulay. 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.

Subscribe to my free updates here.

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Death & Dying, Life & Living, Memories, Poetry

the day i gave away mom’s clothes

October 8, 2017: Mom’s faux fur coat has been hanging in an upstairs closet for five years. I’ve never worn it. I’ve had several boxes of her clothes under my bed for about 18 months.

Last week, the daughter of a friend called to say she is collecting household goods and clothing for a Syrian family arriving in Canada at the end of the month. She could pick up anything I might want to pass along to them on Thanksgiving weekend, she said.

What good are Mom’s clothes doing anyone under my bed? That heavy coat could be keeping someone warm instead of hanging useless in a closet.

It seemed like the right time to do the right thing. As always, the right thing is not the easy thing. This poem is about that, and the fabric of our lives.

stitches & threads

©2017 punkie

Remembering my mom, Patty, September 27, 1928 – August 17, 2016.

today I gave away your clothes
things you wore in shades of rose

skies were grey, the rain it poured
i found myself upon the floor

my eyes became the clouds above
spilled over with both grief and love

why are we so attached to things?
corduroys, capris with strings

perhaps because they seem infused
with memories and times confused

each weave, each fold a story tells
a piece of heaven, a slice of hell

with some stuff i could not part
for fear that it should break my heart

a set of pearls, six pair of shoes
i simply could not bear to lose

bits and pieces are not you retained
your fuller self is my life’s refrain

like the stitches and the threads
we all live on after we’re dead

©2017 Susan Macaulay. 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.

Subscribe to my free updates here.

Hope, Inspiration, Poetry, Videos

pinkie pattie, pinkie punkie & pinkie pia’s peace day poem

Coincidentally, World Alzheimer’s Day is also the United Nations’ International Day of Peace.

Mom, Pia Roma and I made this video on September 21, 2009, to mark #PeaceDay. I wore a green ribbon around my left wrist in support of the revolution that was happening in Iran that summer.

Mom had been showing symptoms of Alzheimer disease since 2006, and she momentarily forgot Pia’s name when we were making the video. But she clearly articulated the meaning of peace in a few words: “Love your neighbours in all the countries,” she said.

What a tragedy that so many people, including too many world leaders seem to have forgotten what peace means, when my mom, who lived with dementia, knew it very well until the end.

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Hope, Life & Living, Love, Poetry

do you know the alzheimer’s alphabet?

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.

Advocacy, Life & Living, Poetry

tears to my eyes

This is a poem about the sad state of world affairs, and about missing my mom who died a year ago.

tears to my eyes

©2017 punkie

Dedicated to my mom, Patty, September 27, 1928 – August 17, 2016.

tears fall when the sun sets
well up at its rise
the least little thing
makes me wanna cry

floods, fire and famine
the rapes and the wars
drugs, death, and destruction
know nothing of doors

the poor and the tortured
sail boats in rough seas
the old and infirm
fall down on their knees

the sailors soon drown
in their thousands unrescued
the diseased and disabled
suffer the likes of ceausecu

haters in cars kill
women in streets
fly nazi flags
as the president bleats

“the news is all fake,”
he claims in a tweet
to the cheers of alt-rights
while the rest of us weep

“red, white, and blue,”
great patriots say
blacks, muslims, and jews
well, they’re not so okay

our climate is changing
mother earth has a fever
woe is me! a denier
has a hand on the lever

bodies split open
insides wide exposed
push nuclear buttons
make people explode

the wrongs I am seeing
I wanna forget
but how can i? who would?
with so much blood being let?

if there’s a god
in some heaven above
i hope she soon sends us
a whole whack of doves

i long for a taste
of afternoon tea
with gingersnap cookies
and love taps on my knee

a kitten, a mitten,
a bird on the wing
your face, peaceful space,
and how we used to sing

the world has gone crazy
it’s crystal, it’s clear
hold on tight, don’t let go
to that which is dear

treasure the moments
laugh while you can
time runs through fingers
like hourglass sand

one year ago here
a part of me died
now everything, always
brings tears to my eyes

 

©2017 Susan Macaulay. 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.

Subscribe to my free updates here.

Love, Memories, Poetry

still flying those night flights

This is a poem to remember August evenings, summer, travel, dreams, hope, death, grief, rebirth, longing, flight, sunsets, and my mother’s imagination and spirit which live on in me and which I hope will infect/inspire anyone who reads this and the words that follow.

 

still flying those night flights

copyright @2017 by punkie

three days before

the first anniversary

of my mother’s death,

i still fly the

night flights

to london

at sunset,

they leave

disappearing streaks

across darkening skies

like shooting stars

i watch later

after dusk

is just

a memory

and still i cry

every time

probably

always

will

 

The earlier poem is here.

© 2017 Susan Macaulay. I invite you to share this link 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.

Advocacy, Antipsychotic drugs, Poetry

confused, not clueless

Some people answer questions with questions. This is a poem in answer to a poem penned by dementia care advocate, author, blogger, and South Australia’s Australian of the year 2017 Kate Swaffer. Her poem “OK, where are my glasses?” inspired me and the words for this one tumbled out willy-nilly. I hope you enjoy it.

confused, not clueless

© 2017 punkie

where have you gone
oh things I once knew
glasses, and jackets –
are you in the stew?

the phone looks just like
the TV remote
and my memory seems
to have gone up in smoke

who took my keys? and
the cat is now missing
“please let me find them,”
my mind keeps on wishing

i look in the bed
in the drawers, and the freezer
why do i suddenly
feel like an old geezer?

“stop repeating yourself,”
chide my son and his daughter
but the questions keep coming
like waves on the water

i still love to talk,
to walk, and to sing,
why do folks guess
i can’t do a thing?

a thing I can do
perhaps even two
so delete your believing
i don’t have a clue

i’m as smart as a whip
i always have been
if you show some respect
i won’t be so mean

don’t feed me chill pills
mashed up in my sup
treatment like that
makes me want to throw up

i crave more, i need better
stop thinking i’m dead
just because a few brain cells
have shrunk in my head!

 

© 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/2017/06/20/the-demented-system/

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