Advocacy, Toward better care, Videos

run for your life!

This video by rock band Foo Fighters hits the nail on the head.

It captures in words, music, lyrics, intensity, and visuals what I imagine underlies the “challenging behaviours” of many people who live with dementia in LTCFs, the conditions of many of which would make anyone want to escape.

I wonder if the idea was perhaps sparked by this creative video advertisement called Breaking Free developed on spec for and ultimately rejected by running shoe makers (it subsequently went viral).

I love the lyrics in particular. Oh, and of course the escapees…


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Humour, Life & Living, Love, Memories

flute flies & love taps

September 11, 2017: Mom had a great sense of humour.  She spent more time laughing than she did crying, although of course like all of us she did both. After she went  into what I would come to call “elderjail,” I often brought her to my place for lunch, or dinner, or healing music sessions with Eric.

On this particular day, September 11, 2014, we made a mid-day meal together. I must’ve had some bananas, or maybe some tomatoes from the market sitting on the counter because there were fruit flies in the kitchen.  Mom and I got to  laughing about the “flute flies,” where they might’ve come from,  and what we might do with them. On the spur of the moment I pulled out my iPhone, as I often did, and recorded a “selfie video.”

While September 11 is remembered as a tragic day by many, and rightly so, I recall it with a smile because of the flute flies and the love taps Mom planted on my wrist thus causing my hand to shake, iPhone and all…

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Advocacy, Antipsychotic drugs, Life & Living, Memories, Real life

the shame belongs to someone else

A friend took the picture above of Mom and I on August 16, 2009, a couple of years after Mom was found to have Alzheimer disease. At the time, Mom still lived on her own, with her cat Pia Roma, in the big red brick house on the hill. It would be another two years before I moved back to Canada permanently to take care of her.

When the pic came up as a memory prompt on Facebook a year and a week after Mom died, I re-shared it because we are so beautiful and joyful in that moment. That post elicited this comment from Diane (not her real name), a FB friend who had known Mom when they were both active in the ladies local golf “circuit:”

“Susan, this is a beautiful photo of your mom (and you), and it is how I want to remember her and probably how she wants to be remembered. She was such a gracious and elegant lady!”

I’m sure Diane’s intentions were good, but her comment raised my hackles. What right does she have to weigh in on what I choose to share or not about my mom? 

Diane followed with an email:

“Susan, the main reason I wrote is also that your mom was so proud and self-conscious of her looks, always ‘coquette’, was always beautifully turned out, but when I look at some of the photos you shared on FB when her Alzheimer Is advanced, not much life in her soft eyes, then sometimes the ones where she is bruised, I think to myself, this is not something she would have wanted shared or people to view her like that.”

My hackles rose even further. I took a bunch of deep breaths, and composed an email in reply.

I wrote about how Mom was there when I was born, and how I was there when she died. I knew her for 60 years; she was my mother. I knew her better than anyone. I didn’t just see her style, grace, pride, pizazz and ferocity every now and again, I experienced it for decades. She taught me how to be in the world. I lived inside her for nine months. She still lives inside me.

I wrote about how I struggled for a long time trying to decide whether or not to post “ugly” images of Mom on my blog. She wasn’t one to air her dirty laundry in public. Hell, she didn’t tell me my father had tried to commit suicide until four months after the fact, and she never told her closest friends.

I wrote that, on the other hand, Mom was a fighter. If she believed something was wrong, she was a pit bull, an effective organizer, and a relentless advocate. She made her voice heard, she wasn’t afraid of anyone, and she didn’t give up. And she was always especially kind to the elderly.

I wrote that after months of soul searching, I decided it was more important for the truth to be known than it was to worry about appearances.

Then I didn’t send the email.

Because Diane is right.

Every time I post an “ugly” picture, I feel sad and torn. Sometimes I feel like I’m going to be sick. It’s hard every single time because it’s true, Mom probably wouldn’t want to be remembered like that. And I don’t want to remember seeing her that way, the way she is in the ugly pictures and videos. I don’t want to remember not being able to do anything to make it better. To bear witness to what happened to her every day was excruciatingly painful. Each time I post a picture or a video or a conversation, I feel that pain. Lots of times I weep.

Yes it’s true, Mom probably wouldn’t want to be remembered like that. Nor would she have wanted to live the way she was forced to live for the last four years of her life. She hated taking drugs. She loved to be on the move. It was cruel and inhumane to chemically and physically restrain her. She didn’t deserve the treatment she got, and neither do hundreds of thousands of others who endure the same and worse.

It’s important that the public be made aware of what occurs much more frequently than people think in hospital wards, long-term care facilities, and behind the locked doors of memory care units. I want everyone to see the reality of what happened to my mother, difficult though it is for me to share it. Because this should not happen to vulnerable elderly people. It’s just plain wrong.

Alzheimer disease did not cause the lack of expression on my mother’s face or the bruises on her body; the antipsychotic medications she was given did. Drugs she was inappropriately prescribed for behaviour that was a response to unmet needs, the environment she lived in, and the way improperly trained staff approached her produced the ugliness I captured in pictures and audio/video recordings.

I was powerless to change Mom’s situation, and it’s too late to help her now; she’s gone.

But it’s not too late to help others, and ultimately it’s also not too late to help my future self should I also develop dementia and require care. I post the ugliness I would really rather not share because sweeping it under the carpet would dishonour my mother more than showing the truth of what happened to her does.

The shame of her bruised face and vacant eyes belongs to those who sedated her with drugs and neglected her care. Dementia was not to blame. And the shame doesn’t belong to her. Or to me.

If she were here to advise me, Mom would tell me to do what I believe is right, and not to pay attention to what people think or say.

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Death & Dying, Life & Living, Poetry

10 more poems i didn’t want to write

I have a love/hate relationship with writing. The bit I love best is being finished. The process, not so much. Maybe that’s why I’m writing lots of poetry lately — it often seems faster, and a little easier.

I once shared 10 poems I didn’t want to write; here are 10 more:

1) an endless prayer (February 2013)

2) enough time (April 2014)

3) i see you (May 2014)

4) a daughter’s prayer to god (May 2014)

5) dying with my mom (August 2016)

6) then and now, sacred cows (August 2016)

7) i didn’t know how soon you’d go (September 2016)

8) don’t rest in peace or sleep deceased (September 2016)

9) blessings and curses (December 2016)

10) truth or dare (January 2016)


©2013 – 2016 Susan Macaulay. 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.

Image copyright: tomertu / 123RF Stock Photo

Care Partnering, Death & Dying, Love

12 UTI symptoms experienced by the elderly and what they’re like in real life

Flashback April 7, 2014: Mom has a UTI, but I don’t know it. She never had one when I cared for her in her own home, so I didn’t recognize the telltale signs (see end of the post) at the time; I would become well-acquainted with UTIs over the next two years as she endured several due (in my opinion) to poor hygiene practices in the LTCF. But on April 7, 2014, I didn’t know what was wrong. It would take her weeks to return to her normal.


She’s still here and there most days. If I find her “wandering” in the hall, I stand a few feet away and wait for her to recognize me.

“That’s my daughter. That’s my Sue,” she says to anyone close enough to hear once she notices me and puts the clues together. Suddenly, she is alive and awake in this place that corrodes everyone in one way or another – body, spirit, or soul. Her eyes regain the hint of a sparkle. Some deeper part of her shines up and out, beams itself over to me. I give her time to fully digest my presence. Her eyebrows lift. A smile cracks the mask-like face that is a side effect of the Seroquel she’s being given.

If she’s asleep in an armchair (which she is more often than not when I arrive), I lean in before I caress her arm to gently waken her. Her eyes open slowly. The right is round and wide and watery; the left is half shut even when it’s open. Both lower lids are rimmed in red and too flaccid to contain her eyes’ natural moisture anymore; it slips down her face in silent tracks of everyday tears.

Her lashes are sparse. She pulled them out as a child and they never grew back thick and long as they might have. The tenacious few that remain are stuck together with yellowish sugary wink or the creamy medication the nurses apply once or twice a day. Cream or sugar? I don’t know which; maybe both. She looks at me. I look back. I search and hope a little.

“What are you doing Punkie?” She’ll often ask. When she does, I heave an inner sigh of gratitude and relief: she remembers me. There’s great joy in those initial moments of reconnection, and I am grateful she still knows me in some way though in many others she never has. She will be safe with me. I will rescue her for a couple of hours from the calamity, chaos and chagrin that hang here like faded curtains on big old windows. We will escape the carnage of forgotten lives tethered to chairs with pieces of string and safety pins and overseen by people who sideline their compassion to preserve their sanity. They are unable to see her, just as she was unable to see me.

But not today. Today she’s neither here nor there. In her place is a madwoman talking gibberish. She hunches, bent from the waist in a small open space at the intersection of two hallways. She looks at me. No spark. She sways. I fear she might topple over. I step closer to catch her in case she should fall. I am the eye of the storm, moving in to envelop her.

“They’re going. Store. Cloudy table. Let’s go,” random stuff tumbles from her in a frustrated torrent.

“It’s OK Mom.”

“We’ve got to get. Can you. He’s he’s he’s. Where did they soup. Tea. My pants.”

I reach for her hand; entwine her fingers in mine. “Let’s go downstairs and play the piano, Mom. Eric is coming to play the piano and sing with us.”

“No. They said socks. Breakfast. I… I… I… ”

“Ok. Mom. Let’s go downstairs to the living room. C’mon.” I squeeze her hand and tug her forward ever so slightly. But her feet are nailed to the floor. Crucified. She can’t lift them, not even to do the Seroquel shuffle.

“I can’t,” she says.

“Try,” I respond.

She stays still. I stand beside her, hold her hand. We are suspended. Both of us here and there and not.

April 7, 2014

Urinary Tract Infection (UTI) symptoms

Yes, my mom was living with Alzheimer disease and the resulting dementia. But her demeanour and behaviour that day were NOT dementia related. They were caused by an undiagnosed urinary tract infection. UTIs in the elderly are sometimes mistaken for Alzheimer disease, and if the individual already has dementia, the dementia symptoms worsen. Here are the six main symptoms of a UTI in the elderly:

  • Confusion or delirium-like state
  • Agitation
  • Hallucinations
  • Other behavioural changes
  • Poor motor skills or dizziness
  • Falling
  • Shaking / shivering
  • Blank stare
  • Garbled speech / aphasia

They may also have some of the typical symptoms found in adults:

  • Urine that appears cloudy or dark
  • Bloody urine
  • Strong or foul-smelling urine

The usual symptoms of UTIs in younger people also include:

  • Frequent or urgent need to urinate
  • Pain or burning with urination
  • Pressure in the lower pelvis
  • Low-grade fever
  • Night sweats, shaking, or chills

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Death & Dying, Life & Living, Poetry

let me weep

No one escapes grief and suffering. But a good number of dementia care partners seem to have more than their fair share. Many are devastated by what they experience as the slow and cruel death of loved ones as they watch them disappear before their very eyes.

I’m fortunate to have never felt like my mom was disappearing, or that I had lost her, or that she was “a shell.” Rather, in some ways I felt she was more her true self than ever. So I didn’t mourn losing her as she lived with dementia, together we made the best of it. But I do mourn her death, maybe I always will.

Care partners express grief, mourning and loss in different ways. One of them is to cry. I’ve always been okay with tears, maybe because I’m well-practiced at crying, which I do randomly on a regular basis. I embrace tears no matter their source, just as I try to be fully present in all of my emotions–not always easy, but rewarding nevertheless.

This poem is about grief, sorrow and tears, and how sometimes it’s good to just let them be.

let me weep

© 2017 punkie

if i should cry
please let me be
it’s just the grief
you cannot see

a pit, a chasm
of black despair
in which i clutch
and gasp for air

the canyon widens
through my chest
its river a torrent
of waves and crests

please leave me here
awash in sorrow
and let me weep
until tomorrow


© 2017 Susan Macaulay. I invite you to share my posts widely, but please do not reprint or reblog or copy and paste my poems and posts into other blogs or social media without my permission. Thank you.

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Family, Life & Living, Love, Poetry

always mother and child

This piece is inspired by an anonymous poem someone shared on Facebook and to which I added and subtracted to create something a little more poetic.

In the original, one phrase in particular struck me: “she is…even your first enemy.” I had a wonderful relationship with my mother. It was also not easy, which I wrote about on Mother’s Day 2012. I am my mother’s daughter: independent, strong-willed and determined. One of the gifts of Alzheimer disease was to provide me an opportunity to heal some of the scars that resulted from our rock-and-roll mother/daughter relationship. I’m grateful for that, and for the truth in the words below.

always mother and child

© 2017 punkie

Your mother is always with you.

She’s the whisper of leaves in the wind; their rustle underfoot on an autumn walk. She is the smell of cookies in the oven, the wet earth after a thundershower, summer flowers in bloom. She is incense in a sacred place, the fragrance of life itself.

She embodies the colours of the rainbow. She is the lullaby of a gentle rain rocking you to sleep. She’s the cool hand on your brow when you’re sick, warm arms around you when you cry, and the smile of shared joys. She is the promise of new beginnings at sunrise and gratitude at the day’s end.

Your mother lives inside your laughter. And you in hers. She is the place you came from, your first home, your last refuge. She witnessed your first step; she is the map that guides each of the millions that follow. She is your first love, your first friend, even your first enemy, but nothing can separate you: not time, not space, not even death.

She is your mother. You are her child. Always.

© 2017 Susan Macaulay. I invite you to share my posts widely, but please do not reprint or reblog or copy and paste my poems and posts into other blogs or social media without my permission. Thank you.

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Death & Dying, Hope, Life & Living, Love

i think mom may be dying

April 23, 2014: I think Mom may be dying.

She lies in bed, her eyes closed and her mouth agape; she looks like she might be ready to go. I sit on the bed beside her, holding her hand. It feels cold. She doesn’t hold my hand back. That’s a first.

“Are you OK Mom?” I ask. No answer. “Mom? Are you OK?” Again no response. A minute goes by. Another one follows. I wait. Then, with considerable effort yet surprising clarity, she answers: “I’m OK.”

“Are you in pain Mom?” I say. This time the reply is almost immediate: “No,” she says, “I’m OK.”

I’m amazed she is able to understand and to answer so succinctly, given her declining language skills and physical condition. Today she’s immobile, unseeing and seemingly knocking on heaven’s door. But she’s also lucid. I’m comforted that, should she in fact be in the process of dying, at least she’s not in pain.

“I’m going to get her some soup,” Sally’s voice is soft. Sally is one of Mom’s several “sitters.” I hate the word “sitter,” but I love and appreciate Sally. She’s with Mom Monday, Tuesday and Wednesday from 3:00 to 8:00 p.m. Mom has more “extra” care than anyone else in the LTCF; many of the other residents have been (it would appear) left there to die on someone else’s watch. They have few visitors (for reasons about which I can speculate based on my own experience), and rarely if ever leave the residence.

Sally cares deeply for Mom. It shows in the way she greets her and treats her (gently, with respect, love and humour). Besides me, Sally spends more time with Mom than anyone else. Over the last 10 months she has come to know her moods, likes and dislikes, and personality quirks. She pays attention. I am so grateful to her.

I feel at ease leaving Mom when Sally is with her; I know she’s in good, competent, caring hands. Mom does best with one-on-one care like the kind Sally provides. Sadly, I’ve come to learn such care is a rarity. Mom is one of the lucky ones, or lucky for a few hours a day at least. Sally bends over on the other side of the bed, gets close to Mom’s face.

“Would you like some soup Patti?” She speaks softly. She knows Mom’s hearing is fine. No need to shout at her as some do.

“Souply douply.” Mom says thickly but clearly without opening her eyes.

I chuckle. “Souply douply” is Mom’s “rhyming slang” nickname for soup. It tells me she’s in there somewhere, swimming in a pool of plaques, tangles, medication and infection. But she’s there, somehow keeping her head above water. Apparently she is still choosing not to leave this world. Her body may be slowly shutting down. Her brain is most surely being destroyed bit by bit. But her spirit is indomitable, and she has the heart of a lioness. She wants to live.

One day soon she will fly over the rainbow. But not this Wednesday.

April 23, 2014

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Hope, Life & Living, Love, Poetry

the forgetful still want to be valued


In March 2017, I gave my first four live BANGS(TM) mini-workshops. BANGS(TM) is the model that emerged based on my own experience of being a care partner to my mom who lived with dementia of the Alzheimer’s type.

The three days during which I delivered the sessions were fraught with technical issues, forgotten bit and pieces and the usual training challenges. At the end of each session, I felt grateful for the opportunity to be with and to be valued by other caregivers for the experiences we shared.

Also at the end of each of the fours sessions, I read “let me shine,” a poem I wrote to help counter the prevailing negative narrative and stigma associated with dementia and the people who live with it. When I got home tonight, I found this beautiful and similarly themed piece in my inbox thanks to Dementia in Dignity (enjoy):

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Life & Living, Poetry

open windows by rozanne baker


A beautiful poem by Rozanne Baker of Amanzimtoti, South Africa. Rozanne, who cares for her mother of 90+ years who lives with dementia in a long-term care facility, sent me this poem out of the blue. I struck a chord with me.

Open Windows

by Rozanne Baker

The home seems deserted.
Silence fills the air.
Who knows what, or when.
Who knows why, or where.

The blinds are drawn.
The curtains closed.
What’s happening inside…
No-one knows.

And then the window opens…
For how long…
No-one knows.
To the people looking in,
it’s like the beauty of a rose.

A glimmer of light is shining,
from the darkness deep within.
A spark of recognition
and the faintest little grin.

“So nice to see you”.
“Thanks for coming by”.
These words are like a rainbow,
lighting up the sky.

And in the very moment
of waiting to reply,
the shutters close as silently
as rainclouds drifting by.

Back in to another world,
that’s far beyond our reach.
Like never-ending waves,
that wash up on the beach.

We’ll have to wait again,
to see what comes and goes.
For the windows to re-open,
For how long…
No-one knows.

©2017 Rozanne Baker
Amanzimtoti, South Africa

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