Poetry – My Alzheimer's Story

These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!

Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.

Respect

You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.

Love

You may have been told that people who live with dementia become empty shells. But that’s not true. They are people with rights and needs just like the rest of us, and they need to be loved just like the rest of us do. Share your love.

Time

You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.

Understanding

People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.

Compassion

Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.

Advocacy

People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.

These are gifts that money can’t buy, but that we all have the capacity to give.

Please give generously.

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alzheimer annie invites you in

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Family, Poetry, Real life

alone: a heartbreaking poem by 89-year-old lilly who lives with dementia

September 8, 2019September 10, 2019 amazingsusan

September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks.

“Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself.

“I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about that! She and I have been playing Scrabble on Sunday nights for about year. I go to her place sometime between 7 and 8 p.m. and we play for an hour and a bit. She tells me the same stories over and over as we play, and I listen like it’s the first time every time.

Lilly is a fine Scrabble player, and I lose about as often as I win. She also has a great sense of humour, and is generally pretty positive despite her many physical challenges including spinal stenosis, which keeps her hunched over, in pain and using a walker.

I’ve come to learn quite a lot about Lilly, who will turn ninety on Valentine’s Day 2020. She has six children (a seventh died a few years ago), and ten grandchildren. Great grand twins are expected in November, and Lillly is determined to live until they’re born.

Lilly’s family members call and visit often, and although I’m not there to witness it, I’m certain at least one of them is in touch each and every day. She has other regular visitors, including me, and she goes to a full day adult program (which she adores), on Mondays, Thursdays and Fridays. She has LOTS of contact with family, friends, and support workers. But sometimes, because of her dementia, Lilly forgets about the abundance of social interactions she enjoys, and she feels lonely as we all do from time to time. When that happened last week, Lilly, who is a great poet and writer, put pen to paper.

As she read me the poem she had written, tears came to my eyes, and at the end, my heart broke with despair. Lilly gave me permission to share her poem (with a few tiny tweaks by yours truly):

alone

i haven’t had a visit
i haven’t had a call
it really seems my family
doesn’t care at all

this is a special weekend
too bad that they don’t see
i’m lonely and I feel
that no one cares for me

i’m old now and I guess
i’m a bother to them all
but oh! how I am wishing
that one of them would call

i do not like the message
their silence seems to send
it comes through loud and clear:
they wish my life would end

Please don’t forget people who live with dementia, even though they may forget you. Call often. Visit often. Hold their hands in yours. Hold their hearts in yours. Tell them you love them over and over and over again, especially when they may not remember what you have said. It means the world to every one of us, young and old, living with a disease or not, to feel we are loved.

* Not her real name.

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

don’t mourn me long

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Death & Dying, Poetry, Real life

euthanasia

June 26, 2019June 27, 2019 amazingsusan

Pia Roma sitting on my VariDesk in 2017. She was an excellent catssisstant ❤

June 26, 2019: I wrote this a month or two before I had to put little Pia Roma to sleep on June 29, 2018. I was in anguish for months, hoping she would die a natural death before I had to euthanize her so she wouldn’t suffer. Pia had been Mom’s beloved companion for about eight years, and then mine for seven after Mom went to #DementiaJail.

I still miss her by my side.

euthanasia

This poem is dedicated to everyone who has had to put a beloved animal member of their family to sleep.

euthanasia

your heart beats strong
as the hours grow long
softly you do stride
through this life
with all its strife
and troubles to abide

a feline muse
clothed in silver hews
with golden eyes moon-wide
you helped me write
through days and nights
lay patient by my side

and we played with string
ran around in rings
laughed until i cried
while disease within
like original sin
consumed, then health denied

though it’s humane
to ease the pain
when everything’s been tried
that you must leave
me here to grieve
sickens me inside

friends say i’ll know
when it’s time you should go
but how shall i decide
to cause you to sleep
in the eternal deep
as if god’s hands were mine

after i put them in prison, mom’s bff became mine

one little kitty’s top dementia care tip

7-part palliative care plan works (for people AND cats)

the paws that refreshes

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Image copyright: robeo / 123RF Stock Photo

Death & Dying, Life & Living, Poetry

eternal anguish

April 27, 2019 amazingsusan

At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.

This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.

eternal anguish

please take her lord,
oh no not yet!
i’m afraid
i might forget

how she smiles
and laughs and cries,
it’s not the time
to say goodbye

but I can’t bear
to see her so
perhaps today
is when she should go

is it selfish
when i wonder
how long before
she’s six feet under?

oh my god
don’t take her now
no, this can’t be
her final bow

let us play
another scene
in which she doesn’t
lay serene

a corpse upon
a broken bed
that’s not my mom
she can’t be dead

she’s the one
who gave me life
who saw me through
both joy and strife

don’t take her god
i need her here,
by my side
forever near

i promise lord
that I’ll be good
and do exactly
as I should

i won’t lie
or kill or loot
or disrespect
an older coot

i’ll love my neighbour
guaranteed
if only you will
set her free

to dance and sing
like we once did
when I was no more
than a kid

please don’t take her
oh no please don’t
i wish you would,
and that you won’t

i know deep down
it’s peace she seeks,
every day
week after week

she craves her home
amidst the stars
her life beyond
these prison bars

but when she breathes
in fits and starts
who will call
the funeral cart?

in this game
where life’s at stake
we’re helpless
to decisions make

it’s in your hands, god,
you call the shots:
undo this heart
tied up in knots

around the rosie
we will sing
lord have mercy
you are the king

a daughter’s prayer to god

don’t mourn me long

dying with my mom

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Advocacy, Life & Living, Poetry

a daughter’s rendering and remembering

November 16, 2018November 17, 2018 amazingsusan

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

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

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

ascendants: awakening to where and whom we came from

September 17, 2018March 4, 2021 amazingsusan

Some days I miss my home and my mom more than others. I think about her, and my grandmothers, and my grandmothers’ mothers and grandmothers, and their grandmothers and so on.

Ascendants: those from whom a person is descended, or from whom she derives her birth, however remote they may be. Everyone has two ascendants at the first level, her mother and father; four at the second level, her maternal grandmother and grandfather, and her paternal grandmother and grandfather; eight at the third etc. Thus, as we ascend the various lines of our ancestry which fork at every generation, sixteen ascendants are found at the fourth level; thirty-two at the fifth; sixty-four at the six; one hundred and twenty-eight at the seventh; and so on. By this progressive increase, we have, at the twenty-fifth generation, 33,554,432 ascendants.

And, ascendant:

“Thus, astrologers believe that the ascendant signifies a person’s awakening consciousness, in the same way that the sun’s appearance on the eastern horizon signifies the dawn of a new day“

ascendants

This poem is dedicated to all those who went before us.

ascendants

the memory of you
sits by my side
like my own shadow
from which i can’t hide

you whisper in morning
sing soft through the night
everywhere, all the time,
and yet just out of sight

it’s strange how we leave
our flesh in the dust
while our essence lives on
in those whom we trust

each one of us comes
from the millions before us
ancestors who lived
on the plains, in the forests

they sailed on the seas
and travelled on trains,
to find a home in the wild
and give it a name

they carved livings from nothing
cried tears in the rain,
prayed for more sunshine,
sang life’s dark refrain

there’s no letting go
of those in the past
i’ll join them at sunrise
when i leave here at last

then we’ll be one
as we were once before
together in peace
in the vast evermore

i see you, i love you, i miss you

dying with my mom

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Life & Living, Music, Poetry

music from a tapestry of shared moments in long-term care

August 31, 2018 amazingsusan

This piece of poetic prose called “Music” is from a collection entitled “A Tapestry of Shared Moments In Long-Term Care” by former Registered Nurse Karen Hirst.

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

A sea of wheelchairs, walkers, easy chairs, an encasement of human form. Having been herded towards this place, they await their cue to rise and move towards their place at the supper table. Silence reigns within this place of mealtime ritual. Eyes stare out from emotionless faces, a spirit of uniqueness noticeably absent. Instead a sameness of scars from shared diseases they bear within. An aura of premature death hangs heavy.

Music starts. Irish fiddles, sing-a long favorites, dance band melodies of eras past and something changes.

Subtle at first….ears pulled alert, eyes that move between faces searching within the emptiness of this space for the source of a new sound. Very slightly at first, an uncontrollable drawing upwards of lips curling into a smile, a finger tapping out the beat on the arms of a walker, a toe exercising its remembered swirl on the dance floor, a hand and arm finding air beneath them as they take on the job of conducting the orchestra. Within supportive arms, each beat of music finds its expression through feeble legs as partners share their dance moves among the feet of encouraging onlookers.

The silence is broken. One is heard to speak words of praise for the dancers, one speaks directly to their neighbor of how nice it all is, one giggles, one remembers that they used to be a good dancer, played in a band, or sang in a choir. They all clap in united support for the bravery and prowess on the dance floor and unabashedly sing out the verses of remembered tunes.

Something has change within this space. No longer the collective herd but a gathering of individuals united in their love of the beat and tune. No longer spiritless forms but animated motion and activity radiating through the unique expression of their joy. No longer alone but connected through the universal language of music. No longer death but evidence of life finding its way to the surface, spreading out into this space and time.

The life giving force of music. Joy stirred by rhythm. Burdens lightened. Steps lifted higher with every beat. Memories surfacing of loved ones, of times spent together when the language spoken was understood by everyone.

Karen Hirst is a former Registered Nurse, who worked primarily in the field of geriatric nursing. She began her career as a Health Care Aide Instructor and held positions of increasing responsibility over several decades. She spent her final 16 years as a charge nurse at Fairview Manor, Almonte, Ontario. Now retired, Hirst writes on topics that interest her, and is actively involved in her community. This piece is from a collection entitled “A Tapestry of Shared Moments In Long Term Care.”

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Advocacy, Poetry, Toward better care

safety pins & call bells

June 23, 2018June 23, 2018 amazingsusan

June 23, 2018: I discover one of my mother’s nightgowns buried in a plastic bag in the back of a closet when I’m packing to move. There’s a pair of shoes (black patent leather), a black and white polka dot skirt, and a white blouse in the bag too. They were all hers.

I pull out the nightgown. It’s soft in my hands. “Snuggly,” Mom would have said. I lift it up to my nose, inhale. It doesn’t smell like Mom. It smells like jail, even now, after two years. I hold it up in front of me, at arm’s-length. It’s white with light blue flowers, a round neck, white embroidery across the upper chest, and four white buttons down the middle. It’ll fit. I sleep in the buff, but I could wear it on winter mornings when I get out of bed.

I turn it around, see the small irregular holes at the shoulders, and a jagged line of haphazard stitches that close a tear about two inches long where it would have spanned Mom’s shoulder blades.

I take off my shirt, and slip the nightdress on. The institutional odour becomes stronger; I feel a little queasy. Then, unbidden, the first line of a poem speaks itself…

safety pins & call bells

i put on your nightgown, the one with blue flowers
it reeks of the jail where top dogs love power

there are holes at the shoulders that safety pins tore
when you got up at night, and tried to walk out the door

but the pins were attached with chains to the wall
you pulled them so tight, they rang bells meant to call

someone might come, but not in time to prevent
the pins that weren’t safe from your dress to be rent

if ever they got there, you’d be out in the hall
they’d scold and admonish, say “you’re going to fall!”

“get back to bed, lie down, go to sleep!
out come the meds if i hear even a peep.”

i didn’t get then, what caused the holes in your clothes
seems neglect and abuse sported ribbons and bows

the flannel was stitched in the laundry below
nurses answered my questions with lies and “don’t know”

but the truth is revealed in weeks, months, and years
follows the light and the tracks of my tears

the pins ripped the fabric, and hastened the end
caused me to fight, and human rights to defend

now i slip on your nightgown, the one with the scars
and thank god you are free of the chains and the bars

The safety pins, chains, ribbons and call bells did not prevent falls and injuries as is clear from the cuts and bruises beside Moms right eye.

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Advocacy, Care Partnering, Poetry

hail mary i need to pee

March 22, 2018September 2, 2019 amazingsusan

In March 2017, I wrote an open letter to Québec’s Minister of Health regarding the rationing of incontinence products in the province’s long-term care facilities. The letter includes a two-minute video, which demonstrates the amount of fluid required to fill an incontinence brief to overflowing, as I found my mother’s to be on numerous occasions. So far, a year later, I’ve not received a reply.

I’ve also written a short vignette on incontinence (based on my mom’s real life experience), in the voice of my fictionalized character Alzheimer’s Annie. Meanwhile, care workers in Ontario held a news conference and talked about how they had no choice but to force residents into incontinence. This poem is about that.

hail mary i need to pee

This poem is dedicated to older adults forced into incontinence. The shame belongs to someone else.

hail mary i need to pee

which way to the bathroom?
how and where should I go?
there’s no one to tell me
and no stopping the flow

I really am desperate
can’t afford to delay
“help me, please help me,”
to a young woman I say

“there’s not a minute to take you,”
she replies with a sigh
“i’ve got twenty more like you,
some near ready to die

“you’ll just have to wait
or go in your pants,
stop your complaining,
give up with your rants

“can’t you see we’re all busy
we’re run off our feet
that’s why we can’t let you
get out of your seat.”

“oh my goodness,” i say
“i’m in such a state,
to pee in my pants
is a shame that’s too great.”

“don’t worry my dear,
you’ll get used to it soon.
here the rule to obey
is you sing to our tune”

my bladder releases
it’s wet on my thighs
my cheeks turn red hot
my eyes start to cry

“i want to go home
get me out this place
hail mary please save me
with your heart full of grace.”

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Image copyright: robeo / 123RF Stock Photo

Life & Living, Love, Poetry

i’ll be glad when christmas is over

December 29, 2017November 13, 2018 amazingsusan

Christmas isn’t all it’s cracked up to be for many people who, for whatever reason, find themselves alone or feeling alone. This poem is about the grief, sadness, and despair that many, including myself, may experience. If you feel like this, you may find some comfort in knowing you are not alone at this time of year or any other time of year for that matter. Difficulties are part and parcel of the human condition.

In the end, all things pass. And there’s hope in that.

P.S. I’d never heard The White Cliffs of Dover until I sang it with Mom after she moved out of the big red brick house on the hill. I thought it the perfect finish for this poem.

i’ll be glad when christmas is over

by punkie 2017

when christmas is over
i won’t have to pretend
to feel jolly and bright
when I’m empty within

i’ve no brothers or sisters
my family’s all gone
there’s nothing but darkness
where once the sun shone

what’s that you say?
be of good cheer?
how can I? who would?
i cry through my tears

my friends all have children
or parents or cousins
get-togethers to go to
sometimes by the dozen

but i’m not invited
to join in their parties
with ribbons and wrapping
and stuff hale and hearty

i wish i were happy
with all that I have
instead i feel lonely
forgotten and sad

but don’t get me wrong
please don’t be mistaken
your pity’s unneeded
as i’m not forsaken

no I’m not alone
oh no not at all!
there are millions more like me
someone’s neglected to call

those who give care
with little support
“we don’t have the time!”
their families retort

old folks in bad places
that none go to see
seems they’ve become
unwanted debris

homeless on streets
in boxes and sheds
without any blankets
or even a bed

people flee their own countries
escape in small boats
then drown by the thousands
because they don’t float

the seasonal spirit
to some is a bottle
or the comfort that’s found
in the folds of a brothel

like everything else
this too shall pass
just as happiness ends
the sadness won’t last

so don’t worry, don’t fret
it’s just the holiday blues
all will be fixed
in the year that is new

our hopes they ring out
like bells on a sleigh
the path will be found
with a will and a way

things may have changed
by this time next year
though the dearth of much promise
fills my heart with cold fear

perhaps if i write
dear santa a letter
next year he’ll deliver
a world that is better

so yes, I’ll be glad
when christmas is over
as i look forward and back
to the white cliffs of dover

https://myalzheimersstory.com/2015/12/23/an-alzheimers-dementia-christmas-story/

https://myalzheimersstory.com/2017/12/06/santa-claus-lives-with-dementia/

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