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/

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10 thoughts on “a dementia care message for the canadian senate”

    1. Thanks Wilbur ❤ I believe they will and I will continue to make my words more direct, more clear and more specific as my voice becomes more powerful and my advocacy spreads further.

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  1. You have my total and complete support on this…it is my goal to also change the picture of dementia one person at a time. With our population aging, we need dementia friendly communities and a much greater understanding of the dementias and best practice techniques & care. Bravo and I support you. I will be sharing your poem on my own facebook & linkedin pages.

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  2. What an amazing poem. I’m speechless. Thank you so much for sharing this Susan! One of my relatives has Alzheimer’s disease, and I’ll surely read this to her.

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  3. Love this poem. It fits my husband’s situation to a T. It feels like a constant battle to keep him off meds. That appears to be the answer for the medical community. I realize it makes it easier for them but it takes away the soul of the person who is on the receiving end of the drugs. I would very much like to print this poem so that I can give a copy of it to those in charge. Will only do so with your permission. Thanks.

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    1. Thanks Marg,

      Yes, feel free to print it out and share it. And yes, you’re right that meds appear to be the answer for the medical community, and it’s very frustrating. You’ll find many posts on my blog related to medication and its overuse.

      You might also like this poem: https://myalzheimersstory.com/2017/04/20/i-want-to-live/

      I would ask that you specifically mention my blog, and encourage them to visit – they might and something!

      Thanks for visiting and sharing, Susan

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