Care Partnering, Life & Living, Love, Toward better care

an open letter to those who think they know better

elder abuse man painterly

Dedicated to unappreciated care partners worldwide. Thank you for all you do.

Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and s/he can barely walk anymore and s/he’s asleep when s/he should be awake and sometimes vice versa and you hardly recognize him/her as the person you used to know and you’re really shocked and feel bad seeing him/her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if you were me and you would rather be shot than end up like this,

Yes; I know. I know what you think.

But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.

I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.

I know by the way she pats her hair that she loves the fact that it’s “done.”  I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.

I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.

I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.

What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?

I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.

I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. You mean less than nothing to me. My care partner means everything to me. I have experienced first hand the effects of decisions I’m told are in his or her best interests, but which in reality have little or nothing to do with her/his health and well-being and everything to do with convenience, reducing costs and conserving her/his wealth for someone else’s use once s/he’s gone.

The effects of the decisions in which I have no say include the cuts, bruises and other conditions about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.

The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition  or my role in her/his life, please consider all of the above and mind your own business instead of mine.

I don’t need or want your judgment or your unsolicited advice.

Regards,

Unseen and unheard care partners worldwide

P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand ❤

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Poetry

we too are one

infinity symbol cropped and chromed

This poem wrote itself in a few minutes, as some do. Others take what feels like an eternity to be born as they cut, scratch and bleed themselves into life.

The choice of image was both accidental and deliberate; it is the infinity symbol, sometimes also called the lemniscate, to which I applied a “chrome” effect using photoshop that makes it look, at least to me, like an otherworldly guise from a masquerade ball.

In case you’re wondering, the spelling of “too” is also accidental, deliberate and perfect.

Finally, I firmly believe we remain spiritually connected to the ones we love whether they recognize us in this world or not.

we too are one

by punkie

i hope i will  remember you and

the look on your face
when you spot me
across the table
your fingers
fluttering
your mind
trying to find
my file amidst all
the others in disarray

i hope i will remember you when

you held my hand tho you
could not quite grasp
who i was or am in
the moments of
time i want
to capture
and embed
somewhere safe
and secure like a life
should be but clearly is not

i hope i will remember you as

the feeling i had when you
looked up and finally saw
the me you knew, then:
“are you my baby?”
you asked and
i said “yes”
freely after
denying it hard
for solitary and tender
years as i struggled to be
more separate when actually
we never can be discrete, can we?

perhaps that’s why i hope i will remember you

even as this broken heart mourns that one
day i won’t, and while you have let me
go we remain so entwined that our
living souls are at once together /
apart in ways i can’t fathom but
which cause me curiously to
gnaw on the mystery of
flesh and blood and
death and dying
knowing both
you and i
always
were
one

 

 

© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

https://myalzheimersstory.com/2018/09/15/ascendants-awakening-to-where-and-whom-we-came-from/

https://myalzheimersstory.com/2016/12/14/missing-you/

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

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Death & Dying, Life & Living, Love, Poetry

a daughter’s prayer to god

Renee James and her mom
Ella Fae James (January 19, 1930 – June 25, 2015) and her daughter Renee James pictured together in 2013

 

This poem is inspired by the struggles of compassionate children, especially daughters (of which I am one) who care for others who live until they die with a terminal illness such as Alzheimer’s disease and other forms of dementia.

I wrote the poem, but it doesn’t belong to me. It’s the collective voice of grieving millions. It belongs to all of us.

Each word is dedicated to every care partner who is torn to pieces, and in particular to Renee James and her mother Ella Fae James (January 19, 1930 – June 25, 2015) who are pictured at the top of this post.

a daughter’s prayer to god

 

a daughter’s prayer to god

by punkie

 

dear god

please take

my mother

now and

never

 

i can’t bear to see her

suffer anymore

nor can I bear

to see her

go

 

mothers and daughters

are sometimes

swallowed up

by life

god

 

we push hard and

then we pull,

trying

to fight

our way

to détente

 

then sometimes, god

dis-ease finds us

first and

makes us

blind, unaware

 

it steals the

things we

hold dear:

thoughts

actions

words

deeds

and dignity

 

please tell me

what happened

to dignity

god

 

is it stuffed in your

back pocket like an old

grocery list with

a nameless

phone number

scribbled on the back?

 

is it what i hear

a lonely elder

choking on

unseen in

over there in

a reclining chair?

 

go away god

if you can’t

keep track

of the notes

in your pockets

or the glory in the

everlasting corners of

your kingdom

come

 

no wait!

forgive me father

for I have

sinned

 

take her now

all these bits and pieces

and fragments of

your daughter

who was once

my mother

 

pluck her quick

from this drug-

induced

trance

 

breathe her back to life

on the other side

 

let her sing and dance

with the angels

instead of

me

 

free her spirit from

the tangled mind

the breaking body

the unholy care

that imprison

her now

 

then again,

bide your time:

 

a sedated slumber

may be better

than a

final resting

place where

I cannot see

her face or

hold her hand

 

how can her life

end as mine began

with dirty diapers

tentative steps

gurgles

drooling and

the search for

unknown words

and meaning?

 

don’t take her now,

god,

don’t.

take her.

i will miss her

too much when

she goes.

 

leave her

hand in mine

 

we can shuffle

a little further down

hell’s road to

heaven

 

we can play a duet

or two, or three

or more

 

i can read her stories

touch her cheek

watch over her

as she did me

when I was

her baby

and she

was not

mine

 

let her stay with me

a little longer

god

before you

take her home

where she longs

to go

 

and when you

take her

god,

don’t take

all of her.

don’t take everything.

 

leave a piece

of her within reach

to accompany me

as I have

her

 

take her now god

but don’t take

her ever.

i will

miss

her

so

 

© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

Subscribe to my free updates here.

Care Partnering, Challenges & Solutions, Love, Spirituality

share a prayer for someone who cares

 

Hand-prayer-beads

 

I’m not a religious person. Not at all.

But I try to find purpose in pain and suffering because needless pain and suffering seem like such a waste.

If we must suffer, and it certainly seems we must, surely there must be a reason…?

Maybe god(s) know what it is…? I definitely don’t!

I see people with dementia every day, and every day a little piece of my heart cracks or breaks.

I’m not alone.

In fact, I’m in excellent company.

Continue reading “share a prayer for someone who cares”

Care Partnering, Life & Living, Love

an open letter to people who think they know better


This post is dedicated to care partners worldwide, many of whom are unseen and unappreciated. On behalf of those you care for, thank you for all you do.

July 13, 2014: Dear random person who sees my mom from time to time and feels the need to point out she has bruises all over her body that look frightening and she has really declined a lot since the last time you saw her and she can barely walk anymore and she’s asleep when she should be awake and sometimes vice versa and you hardly recognize her as the person you used to know and you’re really shocked and feel bad seeing her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if it were you and you would rather be shot than end up like her,

Yes, I know. I see Mom virtually every day. I spend endless hours and fleeting moments with her talking nonsense and singing and helping her to stand when she wants to. Every minute is torture; every second is precious. When she is able, she and I shuffle around the sun deck at the ElderJail in which you may have briefly visited her (or not) and in which she and I have spent hundreds and hundreds of hours together.

If you did drop in to see her, did you notice some of the flowers in the planters around the deck at the “care” facility are the same kinds Mom nurtured in her own window boxes, the ones she loved to water in the early evening with her green watering can and rain collected in the old wooden barrels at the southeast and northwest corners of the big red brick house on the hill where she lived for more than 40 years? You didn’t? What a pity!

She loves begonias, geraniums, petunias and impatiens. She had cosmos, daffodils, daisies and phlox in her garden. We joyfully rediscover flowers each time we explore the sun deck at The Home which is not really a home at all. It’s just a necessary evil on the road to her final destination.

Mom touches a wound on her face (2014)

I know by the way she rocks her body back and forth when she wants to get up and get moving, and by the look on her face and the feel of her hand in mine if she is able to stand unassisted. Mostly she’s not, so I am by her side whenever I can be. I know by the way she pats her hair that she loves the fact it’s “done,” and by the way she touches the cut on her face that it worries her.

I know the colour and brand of her nail polish because I buy it. I know when she had her last manicure because I did it. I know when her sleep is medicated and when it’s natural by the slackness of her mouth and the sound of her breath.

I change her “diapers” and clean her bottom. I recognize her wheelchair by the stain on the seat. When she needs me to, I feed her like a baby. When she doesn’t, I celebrate that she can lift a fork to her mouth and feed herself. I have cried with her, comforted her and felt the sting of her acid Alzheimer’s tongue. I help her engage with her shrinking world, not simply exist in it.

I see her in ways you can’t even begin to imagine. I see us reflected in the mirror of each other. I pray for her to stay and go. I watch her look death in the eye and grab life by the horns every day despite her illnesses. I am her cheerleader, her advocate, her voice. I am her child/mother. Our souls are linked; our destinies are intertwined.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. I have experienced first hand the effects of decisions I’m told are in her best interests, but which in reality have little or nothing to do with her health and well-being and everything to do with convenience, reducing costs and conserving her wealth for someone else’s use once she’s gone.

The effects of the decisions in which I have no say include the cuts and bruises about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. Neither do you know my mother or hers.

Next time you run into me on the street or at the theatre or outside the care facility or even inside the care facility and are tempted to comment, judge, berate or advise me on aspects of my mother’s condition or her care or my role in her life, please consider all of the above and mind your own business instead of mine.

If and when I want your advice I’ll ask for it.

With gratitude,

Susan

P.S. to all my beautiful friends and acquaintances worldwide who give me oodles of unconditional love and support and share their wisdom and experiences with me when I solicit their input: thank you, I love you and I am so grateful you are here to hold my hand ❤

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

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