anger – My Alzheimer's Story

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

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

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

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

teepa snow shows how to help someone living with dementia to put on a jacket or sweater without resistance

October 30, 2018October 31, 2018 amazingsusan

Image credit: Teepa Snow (screen shot from the video below)

“If only I had known,” is what I say to myself every time I see a Teepa Snow demo I haven’t seen before. This one was no exception when I first stumbled across it.

I had very few problems helping my mom get dressed. But how many times did I watch care workers struggle to do the same? Too many that’s how many! When I saw Teepa demo how easy it can be in the video below, I again wondered why EVERYONE who cares in some way for someone who lives with dementia isn’t trained in Teepa’s practical, positive approaches to care.

People who live with dementia “resist” receiving care for good reason: because, more often than not, we don’t know how to do things in ways that make them feel at ease.

Just watch the five-minute video below on how to help someone living with dementia put on a jacket or sweater in such a way that both care partners can feel good about what’s going on, and see if you don’t agree. I guarantee you will discover something you didn’t know or hadn’t thought of before.

Learn a few dead-easy techniques (including Teepa’s trademarked Hand Under Hand) that may help transform your life from misery to magic:

More here:

10+ Teepa Snow videos on dementia basics

Teepa Snow demos Hand Under Hand™ dementia care to connect, comfort and “control”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

//s3.amazonaws.com/downloads.mailchimp.com/js/mc-validate.js(function($) {window.fnames = new Array(); window.ftypes = new Array();fnames[0]=’EMAIL’;ftypes[0]=’email’;fnames[1]=’FNAME’;ftypes[1]=’text’;fnames[2]=’LNAME’;ftypes[2]=’text’;}(jQuery));var $mcj = jQuery.noConflict(true);

Challenges & Solutions, Tips, tools & skills, Videos

20 questions to ask yourself about dementia-related incontinence

April 2, 2018February 27, 2019 amazingsusan

One of the first things we learn to do as toddlers is to eliminate our waste in socially acceptable ways, usually in private. The cultural norms and taboos associated with this normal bodily function are deeply ingrained; they remain with us for our entire lives.

The elderly, and people who live with dementia in the later stages may experience incontinence, and, as a result, have to wear adult incontinence products. Sadly, they may also be forced into incontinence, as my mother was, in understaffed long-term care facilities either because the staff don’t understand incontinence or they don’t have time to properly care for people.

I developed this list of 20 questions to help all of us, particularly care partners and care workers, to reflect on some of the issues surrounding incontinence in dementia care, whether that care is administered at home or in a facility.

How often do you go to the bathroom every day? If somebody told you you couldn’t go when you needed to go, what would you say?
When you need to use the toilet, do you know where to go? What would happen if you didn’t know where to go? How would you feel? What might you do?
What is it like to be in a public place, to be desperate to go to the bathroom and to not be able to find one? How might you feel? What might you do?
What would it be like to be in a strange country, to need to use the toilet, and not know how to ask where to go?
What would it be like to be told you can only go to the bathroom at certain times, according to an arbitrary schedule and not when you need to?
How does it feel when your bladder or bowels are full to bursting?
If somebody told you to urinate or have a bowel movement when you didn’t feel the need to, would you be able to? How would you feel about it?
When was the last time you peed your pants? How did it feel physically and emotionally?
When was the last time you wore a diaper? What would it be like to have to wear a diaper today? If you had to wear a diaper from now on and forever, how would you feel about it?
What would it be like to not be able to take care of your own personal hygiene?
Have you ever been on a long drive, needed to use the toilet and been too far away from the next rest stop to hold it until you got there? What did you do?
Have you ever been so desperate to pee, that you have urinated somewhere that you otherwise might not?
What kinds of signs and signals do people (think children) exhibit when they need to go to the bathroom? What about you?
How would you feel about having to wear a full diaper that weighed more than a kilo (i.e. more than 2 pounds) for several hours? Do you think having to do so would affect your mood and outlook? If yes, how?
How often do you use the toilet with someone else in the room, or in the case of a public washroom in the cubicle with you?
Would you feel comfortable having somebody clean your genitals and behind after you had urinated or had a bowel movement? If not, why not?
How would you feel if, when you needed to urinate or have a bowel movement, you were told to do it in your pants?
What is the relationship between bodily functions and human dignity? What is the relationship between bodily functions and shame?
How would you react if you were told to do things or you started to do things that you had been told all of your life were taboo?
What do you think of people who are incontinent? Do you treat them any differently than you do people who have control over their bladder and bowels? How would you feel about yourself if you were incontinent?

In closing, find good information about adult incontinence products, and watch this powerful scene from the movie Still Alice:

More lists of 20 questions related to other dementia care issues here.

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: robeo / 123RF Stock Photo

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.”

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

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: robeo / 123RF Stock Photo

Advocacy, Life & Living, Poetry

dementia caregivers: a poem

November 23, 2017August 20, 2019 amazingsusan

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/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Advocacy, Life & Living, Poetry

when you’re put behind bars

November 15, 2017November 16, 2019 amazingsusan

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

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Death & Dying, Life & Living, Memories, Poetry

the day i gave away mom’s clothes

October 8, 2017October 9, 2017 amazingsusan

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

Subscribe to my free updates here.

Advocacy, Life & Living, Poetry

tears to my eyes

August 16, 2017September 1, 2017 amazingsusan

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

Subscribe to my free updates here.

Resources, Tips, tools & skills, Toward better care

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

July 26, 2017October 21, 2018 amazingsusan

When people who live with alzheimer disease and other dementias (PLWD) feel threatened or afraid, they react just like most other living things with one of three responses: fight, flight, or freeze. These normal responses are often pathologized in PLWD. When they “fight” back, it’s called “being combative,” or “aggressive behviour.” When they try to flee, it may be labeled as “wandering,” or “exit seeking behaviour.” This unfortunate labeling often leads to PLWD being medicated and/or sedated instead of understood.

How can dementia care partners help reduce anxiety and anger, and thus the responses they generate? I talk about five proven strategies here. Likewise, love, support and compassion can help defuse a crisis situation, calm troubled waters, and help create positive outcomes while averting unwanted ones. In fact, understanding and appreciation (when we mean it of course!) can help lay the foundation for better relationships with everyone, whether they live with dementia or not.

Here are 30 specific things (and lots of additional ideas) care partners and care workers might say to help people who live with dementia feel good about themselves and their relationships:

1) I love you
2) I understand that you feel angry/anxious/afraid/unhappy/sad/hurt/trapped/confused/upset/lost
3) You have a right to feel angry/anxious/afraid/unhappy/sad/hurt/trapped/confused/upset/lost
4) This is maddening/hard/scary/upsetting/unfair/difficult/confusing
5) You are right / I agree
6) It’s not your fault
7) I’m sorry
8) You are special to me
9) I see you and I hear you
10) You’re not alone
11) You don’t have to be afraid
12) I’m proud of you
13) I have confidence in you
14) I will hold your hand
15) You are important to me
16) Your life is precious
17) The world is a better place with you in it
18) I see your spirit shining
19) I’m lucky to have you
20) I want to learn from you
21) You are beautiful
22) You are one of the best things in my life
23) I value the time we spend together
24) Your opinion is important, and you count
25) I feel good when we’re together
26) You have taught me many things
27) I’m grateful for all you have done for me
28) I love the way you: live your life / talk / sing / notice small things / smile / laugh / look / tell jokes / cut carrots / butter bread / compliment others / take care of yourself / take care of others / share your time with me / tell stories about your life / take pleasure in small things / want the best in life / keep going / fight for your rights / speak volumes in silence / make your voice heard / assert yourself / are kind to others / have lived your life / take the bull by the horns / don’t give up
29) I enjoy: holding your hand / singing with you / preparing meals with you / listening to music with you / just being with you / walking with you / seeing you smile / hearing your voice / watching the birds with you / picking flowers with you / hearing you tell stories / sharing memories with you / being inspired by you / witnessing your courage / spending time with you / helping you live as you want to / your sense of humour / dancing with you / living with you / appreciating good days with you / helping you / seeing you thrive / the sound of your voice / the touch of your hand / the look in your eye / our relationship
30) I’m glad: we’re spending time together / you are still with me in this world / you are my… (mother/father/brother/sister/husband/wife/daughter/son/friend) / we know each other / you love me / you are in my life / we share joyful moments together / we overcome challenges together / we have each other / we’re connected
30) You are: amazing / beautiful / smart / my hero / helpful / wise / clever / funny / huggable / lovable / my friend / inspiring / courageous / brave / determined / strong / precious to me / capable / loving / patient / feisty / perceptive / insightful / knowing / gentle/ perfect just the way you are