Care Partnering, Joy, Music, Videos

mom knew hundreds of songs, but down in the valley was her go to

I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.

Mom and I must have sung Down in the Valley thousands of times between 2011, when I moved back to Canada to be her care partner, and 2016, when she said goodbye to this world. During that time I learned so much from our musical sessions together.

“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.

“Okay,” she would respond.

“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.

“How about Down in the Valley?” She would almost always reply — It was her go to.

“Okay Mom. You start.”

“Down in the valley, valley so low,” the words came out of her mouth sweet and true. “Hang your head over, hear the wind blow. Roses love sunshine, violets live dew, angels in heaven, know I love you.”

Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.

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down in the valley: one of our gazillion favourites

5 things I never knew until I sang with my alzheimer mom

Advocacy, Love, Memories, Videos

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

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.

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Death & Dying, Life & Living, Memories, Poetry

the day i gave away mom’s clothes

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

©2017 punkie

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

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

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Activities, Love, Memories, Tips, tools & skills

the telling of pookie: a story of love, magic and possibility

Ivy Wallace wrote and illustrated Pookie. This is a photoshopped image of a photograph of the book’s cover © Ivy Wallace 1946

I didn’t know that Mother’s Day 2016 would be the last one Mom and I would spend together.

That morning, to honour her, I had led the service at the Universalist Unitarian Church in the village; it included the telling of a short story for the children and young at heart: Pookie, an Ivy Wallace tale about the winged rabbit who didn’t belong. Everyone loved it.

That afternoon, I went to see Mom at the LTCF.* I rescued her, as I usually did on my daily visits, from a recliner in the second-floor sunroom, and wheeled her downstairs. At the time, Mom was in what many would call the “later stages” of Alzheimer disease. Many would have also thought she was “no longer there.” I knew better.

Her decline had been exacerbated by the antipsychotics she had been inappropriately prescribed, and was still being given despite my three-year-long battle to have them stopped. Because of the immediate as well as the cumulative side effects of the drugs, as well as the ways in which she was being physically restrained, she was sometimes unable to stand, let alone walk. She would also sometimes “list” to one side or the other. On Sunday, May 8, 2016, she leaned decidedly to the right. I knew from experience there was no point trying to straighten her; her drugged body would simply not comply, and after being righted would slump right back to where it had been.

Her aphasia ranged from moderate to severe. Mostly she conversed through repetition. Nevertheless, she still loved being social; she mirrored, repeated, and tapped or clapped to engage with others. These were not symptoms of Alzheimer’s; rather, they were the communication tools she had at her disposal. Sometimes she was clear and articulate; occasionally, her “intuitive clairvoyance shone through and from time to time she surprised me with statements of deep wisdom and understanding.

Together we got her settled on the sofa in the drawing room. Here’s part of what that sounded like (about two minutes long):

Once we were comfortable, I told Mom about sharing Pookie’s story in church. Of course she didn’t remember Pookie, or the fact that she had read the story to me hundreds of times when I was a little girl. But I knew she would be as captivated by the magical tale as I had been then. So for the first time, I told Mom Pookie’s story, which has many parallels to my own life.

All of this was rich in meaning, love and magic, and is/was such a gift for both of us. Equally important is what the hearing of Pookie’s story elicited in Mom: joy, wonder, worry, curiosity, empathy, compassion, concern, love, laughter, excitement, amusement, and more.

Her response was a clear demonstration that despite the disease, the drugs, and the challenges she faced every day, Mom’s spirit, humanity and capacity for emotion were still intact. It shows that the arts (music, singing, dancing, drawing, painting, writing, and others) should be integral care components for individuals who live with dementia.

When I got to part of Pookie dancing on top of a toadstool, Mom laughed spontaneously for the first time in months—”mask-like face” and lack of expressiveness being among the many side effects of the medication she was being given. I believe storytelling is almost on par with music in terms of its potential to engage people who live with dementia, just as it is a meaningful way to connect with almost anyone at any stage of life.

This is me telling Mom Pookie’s story on Mother’s Day 2016 (a bit of background noise makes it a little hard to understand in a couple of places, so I’ve included a transcript under the audio clip for clarity; but to truly get a sense of the engagement you really must listen to the audio, which is about eight minutes long):

Transcript of the telling of the story of Pookie

Pookie was an amazing little rabbit but, and he couldn’t sleep at night. Oh dear. He wanted to sleep all day even through mealtimes. Oh oh oh oh oh, well that was fine. Yeah, so what happened was when it was time to put all the little bunnies to bed Pookie was up and bouncing around and hopping and ready to roll and that used to keep ‘cause all the little rabbits, all the babies slept in one bed. Oh my goodness, so. So all is bouncing around kept up Pookie’s brothers and sisters so they put him in a little bed all by himself. Oh dear.

Yeah, but that wasn’t the worst of it Mom. No. No, and the mother would say to little Pookie: “Oh Pookie,” she’d say, “you’re more trouble than Swivelkins and Twinkle Toes and Flopsy and Mopsy and Bobasina and Tomasina and little Wee One all combined!” Oh gosh.

Yeah. Isn’t that cute eh? Yeah, and even that wasn’t the worst of it. The thing was is that Pookie had wings – imagine wings. Imagine wings. A rabbit with wings, which he couldn’t fly with them. Oh dear. They were just little. They weren’t properly formed you know. Oh dear. They would always get in the way when Pookie’s mother tried to dress Pookie she tried rolling up his little wings and putting ribbons on them, but then the ribbons would fall off, and she couldn’t get the sweaters on and it was a real problem. Oh gee.

Yeah. So anyway one night Pookie was awake as usual and he decided to go out into the forest and explore and he came across a party of fairies and elves and goblins and all kinds of nighttime folk that come out in the forest at night. Oh my goodness. They were playing violins and tambourines and drums and all kinds of music, fairy music and they were all dancing round and round. So Pookie hopped up on a toadstool and started to dance woo hoo. (Mom laughs.) Oh dear, the land was was no no no he didn’t want to be be be be be. He didn’t want to be on his own. No. He wanted to be part of the gang.Yeah.

He wanted to be in the crew. So there he was dancing on top of the toadstool woo hoo like that. No no no no isn’t that funny? Yeah, and then again and boom! He fell right on his ass on the forest floor. No, isn’t that funny? And when he fell down he happened to fall beside two little goblins and they said, and he told them some of his story and then they said “well Pookie you should go off and seek your fortune.” Oh oh oh, and he didn’t want to do that eh?

Well first of all he didn’t know what a fortune was. Hm hmmmm. And second of all he really didn’t want to leave his family and his four brothers and three sisters and his mother and father but he was feeling like he really didn’t belong there, you know he was different from all the other rabbits. Yeah, oh yeah. So he packed a little hobo bag and in it he put a half a lettuce and an apple and some walnuts and off he went the next night No. To seek his fortune. Oh no. Yeah. So he travelled through the forest and he met all kinds of people. All kinds of, you know, toads and frogs and squirrels and owls and some helped him and some didn’t. Yeah.

One night, one day actually, he was sleeping under a bush and somebody took all his food – his half a lettuce and is his walnuts and— So what what what he didn’t do? Well he kept going and it was just on the edge of winter Mom, and it was getting very cold and so a big snowstorm came and Pookie got lost— Oh no. Yeah he got lost in the forest in this snowstorm. The snow was coming down, it was white, he couldn’t see and the wind was blowing in he was all alone. Oh no. Yeah, and just when he finally kind of lost courage, he collapsed— Oh gee, that would be bad eh? Yeah, in a snow bank. But what he didn’t realize was luckily the snow bank was on the front stoop of the wood cutter’s cottage. Oh gee.

That was lucky eh? Yeah, that was lucky. And inside the woodcutter’s cottage was the woodcutter’s daughter. Oh no. Her name was Belinda. Oh my goodness. Yeah and Belinda heard the thump when Pookie fell on the porch on the step and so she opened the door and the wind was blowing and she picked up little Pookie who was so sad and discouraged after all this travelling that his little heart was frozen and broken in two. Oh no.

Yeah. Anyway, Belinda picked up Pookie and she saw his little heart broken in two and she brought him inside and she put her hands around the little heart and warmed it all up and then stuck it back into his little rabbit chest and bundled him all up and put him in a nice bed beside the wood stove. Oh gee. That was good eh Mom? Yeah, that was good and that was good he was he was he was at least he was he was he was wonderful.

Yeah exactly. And then the next day, or that night rather, when Pookie woke up after sleeping all day Belinda noticed his little wings. They were all shriveled and not grown and she said “Oh Pookie, look you’ve got wings.” And so she kissed both of his wings, one on the right side and one on the left and then wouldn’t you know it, because of Belinda’s love, oh those wings grew into big beautiful wings that were coloured like rainbows and they had glitter on them and they were just absolutely fabulous. No. Yeah. And so Pookie became able to fly with those wings. Oh gosh.

That was good eh? That was wonderful. It was. And so from that day on Pookie lived with Belinda, the woodcutter’s daughter, in the little cottage by the edge of the woods and he would sleep all day in his little basket and then at night he would go out flying into the woods and have a great time. Don’t tell me. Yeah. Oh that would be funny. That was good eh? Yeah, that was good.

That was the story of Pookie.


*Note: Some people have suggested to me that I should avoid the acronym “LTCF” in favour of something else. Replace the “F” in LTCF with an “H” for home, they say. I will be happy to do so when places like the one my mom was in are more like homes than warehouses and elder jails. Until then, I’m sticking with “facility.”

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Care Partnering, Joy, Music, Videos

down in the valley: one of our gazillion favourites

 down in the valley

When I watch the videos and listen to the audio recordings I captured with Mom, I am at once destroyed and delighted.

I miss her and the time we spent together during the last years of her life, and I invariably cry when I re-experience these moments. On the other hand, I am SO lucky to have done everything I could to make her life joyful in her last chapter, and I am always inspired by the indomitable spirit she demonstrated during this extraordinarily difficult time. She loved life. She loved to have fun. She loved people.

Mom also loved to sing (as you may have noticed!). She knew hundreds of songs. Down the Valley was one of her favourites. She and I sang it together thousands of times. Literally. One of them was during a weekly healing music session with Eric in December 2013:

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Image copyright: nameinframe1 / 123RF Stock Photo

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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Copyright: velirina / 123RF Stock Photo

Joy, Love, Music, Videos

painted angels and amazing grace

It’s an early new year’s morning. I sit on the sofa, sip tea and remember the pleasure of last night’s fire. Christmas isn’t long gone, and I love that I leave my decorations up until my birthday at the end of January. I want to stretch the joy of them being without swaddles and boxes for as long as possible.

The sun rises in the east and shines through the large window behind me; its rays travel across the red brick of the fireplace to strike a painted wooden angel that fell from the tree a few days ago, and which I hung on the damper crank because I didn’t know where else to put her. It looks like she feels at home there. I think of Mom, and the amazing grace of this moment as well as that of December 2014 when she and Eric and I celebrated spirit, connection and love. I hear her clap and sing, and watch her smile as if she were here with me.



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gradually back to the future


September 25, 2016.

Dear MAS subscriber:

In October 2015, under threat of being denied access to my mother and potentially being the subject of legal action, I removed more than two hundred and fifty posts from this and other sites and blogs that I run.

I wasn’t afraid of legal action, but I was afraid of being denied the right to see Mom. My daily visits meant the world to both of us, but especially to her–they kept her going. Her best interests were my primary focus. Now that she’s gone, I’m republishing some of the posts I had to take down. That means that if you subscribed to MyAlzheimersStory before October 2015, you will receive posts you may already have seen before. Also, over the next little while, all subscribers will get more posts than usual. Normally, I post two or three times a week. This frequency may change in fits and starts, and you may sometimes receive more than one post in a day. I plan to flag and tag these posts with the word “Flashback”  so you know which pieces are archived material that’s being republished and that you may or may not wish to read. Some of the posts may have broken links that are directed at content that has not as yet been republished. Sorry for that.

I also apologize in advance for any inconvenience or temporary annoyance the republication may cause to longtime subscribers. On the other hand, it gives newer subscribers the opportunity to see content they otherwise might miss.

I fully intend to continue sharing Mom’s Alzheimer’s story as well as my own–there’s so much left to say! I also intend to keep advocating for better eldercare, particularly for those who live with Alzheimer’s disease and other dementias, including pushing for change in our broken eldercare “system,” speaking out against the inappropriate use of antipsychotic medication as well as elder neglect and abuse, and changing the way we see Alzheimer’s disease and other dementias and the people who live with them.  I will also champion the cause of dementia care partners worldwide.

Thanks for your patience as the story continues to unfold, sometimes in ways that are more like a chopped up ball of yarn than a straight line. Thanks to Lemony Gregg for permission to use the beautiful image (a cropped version of her photograph entitled “Gradually”) that tops this page. There’s lots more of her stunning work here: LemonyShots.

I appreciate your understanding and support,

160428 Susan's new specs





Death & Dying, Life & Living, Poetry

i didn’t know how soon you’d go


I was lucky to be at my mother side when she died on August 17, 2016. Many others are not as fortunate. Often people are wrenched from our lives brutally, without any warning whatsoever.

This piece is about death and grieving, and most particularly about the especially difficult grief when those we love are taken completely unexpectedly, leaving us without a chance to say a final goodbye. The poem, called “gone to soon,” is dedicated to people worldwide who have lost loved ones taken in tragic circumstances.

gone too soon


gone too soon

© 2016 punkie

had i known
i’d never hold
your hand again in mine
i might have felt more tender when
our fingers intertwined

had i guessed
you’d leave this world
before the night flights fly
i might have touched the peaceful soul
behind your sky blue eyes

had i divined
this time would be
the last for gifts in kind
i could have offered painted wings
to please our whimsy minds

had i thought
your breath would stop
before the day was over
i might have wished upon a star
or plucked a four leaf clover

had i gleaned
death’s hasty scheme
i would have been close by
to whisper clear: “your time is here,
let heaven be your guide

if i’d surmised
the moon would rise
without you in this world
i would have prayed and longer stayed
to watch your flag unfurl

had i believed
you’d choose to leave
heading homeward bound
i could have sung a final song
in which we’re lost and found

if i’d supposed
this door you’d close
before we’d had the chance
to say goodbye with tearful eyes
we’d have had just one last dance

but i didn’t know
how soon you’d go
a lifetime’s not enough
the days we’re leant too swift are spent
on fears and things and stuff

i think of how
it once was now
not past or future tense
when time stood still, a skylark trilled
and grief was not a fence

so here I mourn
my soul is torn
recalling times we had
walking free, across the sea
i can’t help feeling sad

today it dawned
the sun’s rays shone
to honour all we’ve lost
the gifts we got, our lives to plot
no matter what the cost

tommorow’s hope
is in my scope
my spirit soldiers on
with purpose strong to right what’s wrong
then I too, soon will be gone


Please also see: dying with my mom, homeward boundnight flights to london and dead mom talking.

© 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.

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Copyright: antonioguillem / 123RF Stock Photo

Life & Living, Memories, Poetry

Two Mothers Remembered by Joann Snow Duncanson

I love this beautiful poem by Joann Snow Duncanson.

It’s at once tender and loving, sad and joyful, grateful and hopeful.  Mothers and daughters worldwide who live with dementia every day know the truth in these words captured so eloquently in just six stanzas.

Thank you Joann Snow Duncanson, for living the journey with your mother and for sharing it with us in this beautiful piece of poetry. We too are one.


Two Mothers Remembered

by Joann Snow Duncanson

I had two mothers – two mothers I claim,
two different people, yet with the same name.
Two separate women, diverse by design,
but I loved them both because they were mine.

The first was the mother who carried me here,
gave birth and nurtured and launched my career.
She was the one whose features I bear,
complete with the facial expressions I wear.

She gave her love, which follows me yet,
along with examples in life that she set.
As I got older, she somehow younger grew,
and we’d laugh as just mothers and daughters do.

But then came the time that her mind clouded so,
and I sensed that the mother I knew would soon go.
So quickly she changed and turned into the other,
a stranger dressed in the clothes of my mother.

Oh, she looked the same, at least at arms length,
but now she was the child and I was her strength.
We’d come full circle, we women three,
my mother the first, the second and me.

And if my own children should come to a day,
when a new mother comes and the old goes away,
I’d ask of them nothing that I didn’t do.
Love both of your mothers as both have loved you.

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