Advocacy, Life & Living, Poetry

a daughter’s rendering and remembering

November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry.

the rendering

©2018 punkie

the rendering

nothing more
could be done
all fault lay with
the setting sun

whose will it was
to force imprison
the one from whom
we’d both arisen

a deal had been struck
the year before
when no one knew
what lay in store

then came time
to pay the piper
fate took aim
fired like a sniper

shot her, then me
but not to death
left us bleeding
drained of breath

we struggled hard
for four more years
held hands amidst
the joys and tears

until the day that
she surrendered
with untold truth
for me to render

now i fight on
to right the wrong
of stolen voices
and silent songs

 

©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, 2017:

when you’re put behind bars

November 16, 2016:

the day our best wasn’t good enough

November 16, 2015:

joys and tears throughout the years

November 16, 2012:

moving day

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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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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.

Advocacy, Life & Living, Poetry

i want to live

 

My mother was a woman of great strength and determination. A fighter. This poem reflects what I know she most certainly felt the last four years of her life because she told me so every day in multiple different ways up until a very short time before she died. I continue to honour her final chapter by advocating for change.

I encourage you to listen to the poem by clicking on the arrow at the left hand side of the audio player.

i want to live

©2017 punkie

Dedicated to the hundreds of thousands of elderly people around the world, particularly those living with Alzheimer and other dementias, who are physically and chemically restrained in one way or another.

i want to live

why do you wish to jail me so?
i cry, i beg: “please let me go!”

i want adventures far and near
i want to roam, I have no fear

strength abides deep within
at my core, through thick and thin

don’t leave me here to sit and rot
in chairs that wheel, without a thought

cast your eye beyond disease
forget it makes you ill at ease

let go, don’t try to hold me near
don’t call me hon, or sweet or dear

see the power i can wield
when free to run in open fields

half empty glasses aren’t for me
fill them up with hope and glee

i am here, where few dare to look:
a living, vibrant, unopened book

heaven calls with open arms
“come now,” it says “and taste my charms”

but i’m not ready, i prefer to stay
i dream I might still laugh and play

my life has more good bits to live
the chances are all yours to give

to hold my hand, not chain my heart
before goodbyes and worlds apart

please let me go to dance and sing
explore the place where i am king

i want to live before i die
not die to live as here i lie

 

©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/2018/06/23/safety-pins-call-bells/

https://myalzheimersstory.com/2016/07/24/let-me-shine-a-dementia-rhyme-to-open-minds/

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Advocacy, Poetry, Toward better care

what we see will be undone

On Friday, April 13, 2017, I found stories of abuse everywhere I turned.

In the morning, for example, an inbox update took me to a New York Times story headlined: “Sexual Abuse at Choate Went on for Decades, School Acknowledges,” in which it was reported that “at least 12 former teachers had sexually molested — and, in at least one case, raped — students in a pattern of abuse dating to the 1960s.”

The article expanded: “It is the latest in a string of prestigious private academies that have faced accusations of sexual abuse by faculty members, including St. George’s School, in Rhode Island, and Horace Mann and Poly Prep in New York City.”

In the evening, CBC As It Happens host Carol Off interviewed United Nations Code Blue Campaign co-director Paula Donovan on the abuse of children by UN peacekeepers in Africa and Haiti. Donovan said “there were two hundred and fifty allegations of sexual exploitation and abuse by the peacekeepers just in the Central African Republic.” That was during 2015 and 2106 alone. The peacekeepers in question, she said, leveraged their power to abuse their victims.

These things happened, and still happen, because victims are not believed, witnesses remain silent or are forced into silence, whistleblowers are vilified and punished for speaking out, abuse is swept under the rug, and organizations, institutions, and professional bodies protect themselves and their own.

I believe the same kind of thing happens with respect to the infirm and elderly, particularly those with dementia, in long term care. Their neglect and abuse remains largely unseen and unreported in facilities such as nursing homes around the world. I also believe that when lies are told, the truth unfolds.

Also on Friday, April 13, I became aware of the story of Carolyn Strom, a Saskatchewan nurse who, in 2015, had voiced her opinion regarding what she considered substandard long-term and palliative care received by her grandparents. As a result, she was convicted of “professional misconduct” and fined $26,000 by the regulatory body of professional nursing in Saskatchewan. I immediately donated to the GoFundMe campaign to pay the fine so she can continue to practice nursing.

An interesting and provocative segment on Strom’s case aired on CBC’s The Current on April 17, 2017; it includes the original FB post and additional quotes and information.

Saddened and galvanized by my own experience as well as by these and many other stories of the same ilk, I wrote the poem below.

what we see will be undone

Dedicated to those all those young and old who experience abuse and all those who speak out on their behalf.

what we see will be undone

©2017 punkie  

tinker, tailor, soldier, spy
kissed the kids and made them cry

some in homes, some at war
when it’s dark, behind closed doors

teachers, coaches, doctors, nurses,
for perks, or pleasure, or fatter purses

claim to care with public faces
but hurt and harm and leave scant traces

the young and old have trusting hearts,
want peaceful times, and fresh new starts

they’re open wide to suggestion
innocence asks few questions

“shhhhh, don’t tell, it’ll be our secret,”
perps play on guilt, and tender meekness

imprisoned elders, imbued with fear,
are sickly, sweetly called “my dear”

believing lies, they follow orders
do the bidding of their warders

then end up beaten with no voice
muted, forgotten, devoid of choice

sharp witnesses few and far between
chart what goes on behind the scenes

they blow whistles loud and clear
which deafened systems fail to hear

the abuse enabled continues on
of lesser ones from dusk ’til dawn

broken children, neglected seniors
die inside of frail demeanours

from power corrupted absolutely
by those who use it so astutely

but deceit and evil once concealed
can be stopped with truth revealed

so break the silence, take a stand
repudiate abusive hands

what we see will be undone
if and when we speak as one

 

©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.

like one flew over the cuckoo’s nest

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

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Advocacy, Antipsychotic drugs, Life & Living, Toward better care, Videos

what i said to the senators

 

On Monday, January 30, 2017, I addressed Standing Senate Committee on Social Affairs, Science and Technology. I told part of my story. There’s much more to tell. But I was pleased when Senator Ogilvie, who chairs the committee, responded in a way that validated once again what I know to be the case about the use of antipsychotics in dementia care.

“One of the things we noted in our four-part study on over-medication in Canada is that it is widespread throughout the entire medical spectrum,” Senator Ogilvie said, “and it becomes pronounced in senior care and even more pronounced in the case of patients with dementia. It is a major, dramatic problem.”

The senator went on the say that seniors’ human rights are “hugely violated in many areas,” particularly with respect to over-medication. I also wanted to high-five Professor Linda Garcia of the University of Ottawa, who said of LTCF care workers: “The people who do want to do good, and who do get it, can’t.” She is so right. Blocked by old glass-half-empty mindsets, I suspect these potential innovators leave the profession out of frustration at the poor standard of care as well as their impotence to do anything to change it. Being a whistleblower or an advocate is a tough row to hoe as I have found out these last ten years.

I’ve extracted my bit of the Q & A, along with their comments in the video below. The full two-and-a half-hour session may be viewed here.

Listen to or read my poem for the senate.

Subscribe to my free updates here.

Activities, Advocacy, Antipsychotic drugs, Toward better care

seeing the potential when someone tears a sink off the wall

When I was deeply moved by the now-classic movie One Flew Over the Cuckoo’s Nest in 1975, I never dreamed I would live through a version of it more than forty years later. This image is drawn from the final scenes in which “Chief” tears the hydrotherapy cart from the floor (as McMurphy had been unable to do despite his best efforts), and throws it through a window to make his escape after having suffocated his friend.

~~~~~~~~~~~~~~~

“Philippe, we have a case like you’ve never seen before,” Philippe Voyer begins as he recounts a story to Quebec Health Minister Gaétan Barrette and hundreds of participants at Quebec’s first-ever Best Practices in Long-term Care Facilities Forum. “We have a man who tore the sink right off the wall.”

Voyer, a researcher and professor of nursing at the University of Laval in Quebec city, surprised the care home staff member who had called him complaining of an unmanageable and destructive patient with Alzheimer’s disease with his answer, just as he likely is the healthcare professionals gathered at the forum.

“That sounds to me like a man with a lot of potential,” Voyer continues with his story. “He’s focused–he had to be to do what he did. He still has a lot of strength, he’s in good physical shape, what he did was impressive. I have no doubt we’ll be able to engage him in some way.”

Voyer looks at the audience, pauses slightly before he goes on. “Then the nurse tried to convince me with more evidence: ‘Oh but Philippe, you should see what he did down the hall. He ripped all the tiles from the floor with his fingers.'”

“Determined!” I said to her,” Voyer quips. The audience laughs. So do I as I watch the video of Voyer delivering his remarks to the forum (in French). He’s doing an excellent job of reframing, of showing his colleagues why we need to see things differently.

Voyer is one of a small but growing number of medical professionals worldwide who have begun to understand that so-called behavioural and psychological symptoms of dementia (BPSDs) that are blamed on Alzheimer disease and other forms of dementia are in fact not caused by the disease.

“The disease is a predisposing factor,” Voyer admits, “but it’s not the main cause. Boredom is. People in long-term care get bored, and, like we all do when we get bored, they find things to do. But the things they find to do are not always in line with what facility staff would like.”

I know the truth of what he’s saying because I witnessed it myself day after day when Mom was in what I have come to describe as “elder jail.” I’ve also heard countless stories from other care partners who experienced the same thing when they placed family members in LTC. It’s not the disease. It’s how we “care” for the people who live with it. Misunderstanding their behaviour often leads to over-medication with antipsychotic drugs.

“Some residents who have dementia may have worked all their lives doing manual labourer, for example,” Voyer elaborates. “When they feel bored, they go back to doing what they know. We learned that the gentleman who tore the sink off the wall and the tiles from the floor had been employed in home construction. He was just doing what he knew how to do. Likewise, people who are bored may start to explore. They go into other people’s bedrooms. When they do, they get involved in altercations with other residents. Soon they are labelled as having behavioural issues. What to we do then? We medicate them. It’s as simple as that.”

My experience and Voyer’s observations are supported by a growing body of evidence-based research. Recent work by Dr. Jiska Cohen-Mansfield, who has been studying age-related dementia for decades, and is an authority on the subject, clearly identifies these main causes of responsive behaviour:

  • boredom
  • lack of stimulation
  • loneliness
  • lack of activity
  • insufficient social interaction
  • being uncomfortable
  • pain

“It’s not rocket science,” concludes Voyer. “There are many things we can do to change the situation. And I can tell you with certainty that antipsychotics are not effective in alleviating boredom. It’s time to rethink and reduce our use of antipsychotic medications in treating people who live with dementia.”

Amen to that Philippe, amen to that.

https://myalzheimersstory.com/2017/11/15/the-broken-lens-of-bpsd-why-we-need-to-rethink-the-way-we-label-the-behaviour-of-people-who-live-with-alzheimers-disease/

https://myalzheimersstory.com/2018/06/09/take-off-the-blindfolds-and-banbpsd-an-open-letter-to-the-worldwide-dementia-community/

https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/

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Advocacy, Poetry

a dementia care message for the canadian senate

Me and Mom July 12, 2014, on one of the occasions she had a black eye from having fallen.

I was invited by Senator Ogilvie (Chair), and Senator Eggleton (Deputy Chair), of the Standing Senate Committee on Social Affairs, Science and Technology, to participate in a panel discussion on the committee’s report Dementia in Canada: A National Strategy for Dementia-friendly Communities.

I was pleased to attend on Monday January 31, 2017, when Senators Ogilvie and Eggleton, and their colleague Senator Olsen welcomed a six-member panel to discuss issues relating to the committee’s report, which called for the development of a national dementia care strategy for Canada. I was also grateful for  the opportunity to add my voice in the Q & A session, which followed the panel discussion. This poem was inspired by the report, the panel discussion and my own remarks.

a poem for the senate

Dedicated to the cause of creating a dementia care strategy for Canada.

a poem for the senate

©2017 punkie  

her dad said she had st-vitus dance
when as a child she skipped and pranced

then she died not long ago
because she stood, and didn’t know

her legs were weak from meds they gave her
to stop the so-called “bad behaviour”

she was robbed of living truly
by nurses, docs, and care unruly

her chapter last, a travesty
undeserved, a tragedy

the disease she had was not the cause
a fact that should give us all pause

she suffered at the hands of systems
the misinformed and money driven

big pharma and its paring knife
excised her mind for profits rife

warehoused, abused for four long years
restrained by drugs, and others’ fears

cuts and bruises, falls and scrapes
UTIs and no escape

that’s because some like to coddle
a glass half-empty biomedical model

and we dismiss before their time
ones we love on their last climb

“she’s gone,” they say, “she’s just a shell,
condemned to wander in dementia hell.”

my mom resisted, caused others trouble
they blamed it on an alzheimer’s bubble

but i knew different, i touched her core
sang her songs, found ways to soar

each day we went beyond the borders
of chairs reclining, and doctors’ orders

they tried to put us both in prison
because we didn’t care to listen

to edicts down from those above
we preferred to laugh, to love

like her brain, my voice was strangled
with plaques and taus and expert tangles

emperors still have new clothes
it’s time for them to be exposed

dementia lives have much to offer
worth open hearts and likewise coffers

as senators, sure, you must agree
it’s only death that sets us free

before we’re dead, we’re still alive
even dementia doesn’t kill our drive

let’s make count our wisdom gathered
so the press won’t say we blathered

i ask you please to be decisive
harken close, don’t sit derisive

elders are our blood and flesh
they deserve no less than best

thank you panel, parliamentary ears
for opened eyes, and sharing tears

i end this poem on bended knee
in hope you each will hear my plea:

together let’s fix this stuff that’s broken
not let good work be merely token

©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/2017/02/08/what-i-said-to-the-senators/

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

Subscribe to my free updates here.