grief – Page 2 – My Alzheimer's Story

hail mary i need to pee

March 22, 2018September 2, 2019 My Alzheimer's Story

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.”

understaffed nursing homes force residents into incontinence

20 questions to ask yourself about dementia-related incontinence

crazy daughter weighs mom’s wet “nappy” and writes open letter to minister of health about it

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Death & Dying, Love, Spirituality

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

February 25, 2018September 15, 2018 My Alzheimer's Story

In the three short videos below palliative care physician Dr. Mike Harlos gives advice aimed at other palliative care doctors and nurses. He talks about how to communicate with family members as someone they love approaches death.

But I think there’s something for all of us learn from his gentle wisdom on how to interact with those who find themselves at the side of someone they love as that person dies. It also struck me that what Dr. Harlos says applies equally to people who live with dementia who many others think are “gone” long before the actually are.

In these three short videos (each is less than three minutes long), Dr. Harlos shares simple pieces of practical advice with respect to communication:

Assume they can hear you
Take it out of the room
Make space for final conversations

I invite you to watch and listen, and hope you will be as deeply touched by Dr. Harlos’s words as I was/am. Just listening to his voice at once calmed me, and brought me to tears. As I watched the videos, I felt as if I were in the presence of an angel, albeit an earthbound one for the moment. I might have made the experience of dying with my mom more beautiful and meaningful had I been exposed to the Canadian Virtual Hospice before her death instead of after.

I wrote a poem about my final moments with my mom; it’s here.

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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Life & Living, Love, Poetry

i’ll be glad when christmas is over

December 29, 2017November 13, 2018 My Alzheimer's Story

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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Advocacy, Love, Memories, Videos

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

December 26, 2017June 26, 2019 My Alzheimer's Story

December 26, 2017: In November 2012, I put Mom and her best friend Pia Roma in separate prisons.

Pia went to the friend of a friend’s where she hid under the sofa in a cigarette-smoke-filled apartment for a month. My friend rescued Pia from her friend’s, but that didn’t help. Pia hid under my friend’s bed for another month until I rescued her again.

Mom & Pia April 10, 2012, six months before being incarcerated

I didn’t want a cat. Just like I hadn’t wanted to return to Canada to care for Mom in 2011. But I couldn’t bear for helpless Pia who, in Mom’s words, was her “best friend” to live under a sofa or a bed for the rest of her life. So when I decided I needed to stay close to Mom instead of restarting my old life in a new way, I rented a house near the nursing home I would come to call “ElderJail,” and I brought Pia Roma to live with me.

I succeeded in rescuing Pia, but I failed to liberate my mom.

Since then, Pia has accompanied me through ups and downs, never saying anything but “meow” (like Zlateh the Goat said nothing but “maaaaaaa”), or purring loudly, and sharing my morning tea as she often did with Mom, which I captured on video on December 28, 2009, and aptly title “the paws that refreshes.”

Pia is getting old now, and will soon join Mom. I will be devastated when she goes. It can be painful to grieve the loss of those we love, but it’s also normal. For me, grief (and tonnes of other stuff) involves lots of tears.

But none of us should die before we’re dead, and so, in the meantime, Pia and I paws frequently to count our blessings. We hope you do too. We also invite you to remember that, even in prison, there is space between the bars.

https://myalzheimersstory.com/2016/12/28/the-paws-that-refreshes/

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Death & Dying, Family, Real life, Toward better care

if only they had listened to ciaran

November 30, 2017November 30, 2017 My Alzheimer's Story

Phyllis Cranfield with her grandson, whom she saw for the first time on October 25, 2017, eight days before she died of a UTI.

Phyllis Cranfield was born in Ireland in 1931, and moved to England in late 1968; she birthed her son Ciaran in 1969, a daughter followed in 1973. Phyllis Cranfield died on Thursday November 2, 2017, after medical staff ignored the alarm bells Ciaran had rung over the previous several weeks.

Ciaran knew there was something wrong with his mom, just like I did on multiple occasions during the four years Mom was in “care.” But the medical powers that be didn’t listen to Ciaran, just like they didn’t listen to me. Ciaran posted his story in a caregivers group on FB, and gave me to permission to repost it here.

“Thursday November 2, 2017: My Beautiful Mum Sadly passed away today not from this horrible disease, but from the lack of care at NGH where they refused to listen to me when I said she had a UTI. Instead, they blamed her poorly condition on her dementia. Three weeks ago, they said she was medically fit and they discharged her.

The very next day I had to call the ambulance to take her back to the hospital. She was diagnosed with a UTI, and was also badly dehydrated; she was re-admitted. She seemed to be recovering well, and then on Saturday I noticed something was wrong. She was clearly ill. I alerted the staff.

Again I was ignored. On Monday I got a call saying to get their ASAP and was told her heart rate was 188bpm and they were trying to bring it down before they moved her to the heart centre later I was told she had sepsis and they were giving her strong antibiotics, but sadly it was to little to late and she passed away at 12:50 pm today. R.I.P Mum love you always

Thursday November 3, 2017: Further to my post yesterday about my Beautiful Mum passing I collected the death certificate today and the cause of death wasn’t sepsis like I was told yesterday.

They listed the cause of death as a urinary tract infection the very thing I told them about five weeks ago it took them nearly two weeks to start the treatment, and even then they only put her on a low dose antibiotics.

My Mum’s death was so preventable. Reading this today I feel sick.

Things like this should never happen in this day and age, I know my Mum lived with dementia and of course I was prepared that one day that would take her. But I wasn’t prepared for her going from a preventable infection like a UTI.

I only wish they had listened to me.”

This is a plea to LTCF staff worldwide: please listen to the ones who know their family members best. By doing so, you will provide better care, reduce needless suffering, and save lives.

Don’t dismiss, ignore, and patronize us. Don’t restrict the times we can see our loved ones, or worse, stop us from seeing them altogether. This is a form of elder abuse.

Our advocacy is an invitation to collaborate, not an exercise in finger-pointing or blame. Care partners like Ciaran and me and family members everywhere want to work with you, not against you, to create better lives for our loved ones living with dementia no matter how long or short a time remains for them. We want them to live well until they die, and we want them to die with dignity and the least amount of suffering possible. They deserve the best from all of us.

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Advocacy, Life & Living, Poetry

dementia caregivers: a poem

November 23, 2017August 20, 2019 My Alzheimer's Story

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.

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

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 15, 2017November 16, 2019 My Alzheimer's Story

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

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

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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Death & Dying, Life & Living, Memories, Poetry

the day i gave away mom’s clothes

October 8, 2017October 9, 2017 My Alzheimer's Story

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

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

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Advocacy, Life & Living, Poetry

tears to my eyes

August 16, 2017September 1, 2017 My Alzheimer's Story

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

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

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Care Partnering, Life & Living, Memories, Real life

how mickey mouse keeps viv & gregg’s love alive

August 15, 2017 My Alzheimer's Story

Thanks to Gregg Viall for this touching story about his wife Viv, himself and Mickey Mouse.

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

One night, at the beginning of our journey with Alzheimer’s disease, my wife Viv was crying uncontrollably, devastated by the prospect that one day she might forget who I was. I tried everything I could for a good hour to stop the flood of tears and to get her to relax. Nothing worked.

Then I had a brilliant idea.

“I’ll get a Mickey Mouse tattoo so you’ll always remember who I am,” I said.

“Really?” she said. She immediately stopped crying, and embraced me.

“As God is my witness,” I replied.

Ironically, Viv and I met at a divorce recovery workshop in 1991; I was going through one, and she was supporting a friend. She and I became friends in turn, and about a year later we went to Disneyland on our first date. I guess that sounds kinda hokey, but we had a great time. I knew then that we were perfectly matched.

Two months later, Viv gave me a Seiko Mickey Mouse watch for my birthday. We laughed when I opened it. I still wear it every day. It’s the only watch I own.

You’ve probably guessed by now that I’m not the sort of guy who would go for tattoos–I’m more like what they used to call “preppy.” But I do keep my promises, and I did get Mickey Mouse tattooed on my left upper arm, like I told Viv I would.

Fast-forward to Easter Sunday 2016, four years after she’d been so worried about not remembering me:

Viv and are sitting on the sofa watching a DVD, some TCM movie no doubt, they were her favorites–Barbara Stanwyck in particular. Out of the blue, she asks me to pause the movie. She turns and looks at me.

You’re so nice,” she says. “But who are you?

I feel as if a freight train has ploughed into my chest, and the force of the blow kills a part of me. I hide the pain for Viv’s sake, and, without a word, I roll up my shirtsleeve to reveal Mickey.

Viv examines the tattoo, traces the outline with her finger, and then looks at me for a split second before tears begin to roll down her cheeks.

“You’re Gregg,” she says. “You’re my husband Gregg.”

Then she grins, and gives me a bear hug the likes of which I haven’t had in years.

Numerous times after that, when I felt she needed reassurance, I’d roll up my sleeve like I did that Easter afternoon and show her the tattoo. I even bought several t-shirts with Mickey emblazoned across the front, and a couple of baseball caps as well, because they helped me stay connected to Viv.

Towards the end, when I’d ask her who I was, she’d say: “Mine,” and that was good enough for me. Viv and I remained bound together in a deep and meaningful way right up until the moment she passed. Dementia never got in the way of our love, and after 25 years that watch means more to me than ever, especially now that Viv’s not by my side anymore.

Viv doesn’t need the tattoo to recognize me now; she can see me as clear as day from where she is, and she knows exactly who I am. As for me, I look at Mickey from time to time in the mirror. He reminds me to take whatever I get and make the most of it because no matter how odd or how small a thing is, there may come a day when it’s all I have.

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hail mary i need to pee

hail mary i need to pee

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1 ) Assume they can hear you

2 ) Take it out of the room

3 ) Make space for final conversations

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i’ll be glad when christmas is over

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dementia caregivers

dementia caregivers

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behind bars

behind bars

November 16, 2016:

November 16, 2015:

November 16, 2012:

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stitches & threads

tears to my eyes