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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My Alzheimer's Story 
May I play this at my Father’s funeral Thursday, May 4th. In Houston, TX at Veterans Memorial.
It’s BEAUTIFUL, thank you for sharing it with everyone.
God Bless,
Denise Mommsen
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Dearest Denise,
I’m so sorry for the loss of your father. I would be honoured for you to play my reading of my poem at your father’s funeral. I can imagine it being even more beautiful if you were to have a male relative or friend with a deep and resonant voice to read it live at the celebration of your father’s life. They would need to practice reading it before so they fully understood the rhythm – perhaps they could listen to my reading and improve on it. I’m really touched that you feel moved by the words. I wrote most of the poem many months ago and on a whim finished it today. I guess it was meant for your dad ❤ Please feel free to contact me anytime if you want or need any help to include this in your father’s funeral. You can reach me by email here: susan@myalzheimersstory.com
Thank you again, and again I’m sorry for your loss and stand with you in your grief.
Susan
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God bless you, Susan. What a beautiful piece…and having had a mother with this dreaded disease…I know this was written from your heart as you saw life from the eyes of your mother’s soul. xo Diana
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“…written from your heart as you saw life from the eyes of your mother’s soul.”
Yes, that’s it exactly. I sometimes feel like I am a channel. Writing, poetry in particular, makes me feel like that. More on that here if you’re interested: http://amazingsusan.com/2017/04/20/word-games/
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