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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Joy, Life & Living, Love, Memories, Videos

an alzheimer easter egg hunt

I had intended to leave home over the Easter weekend 2012. It was to be my second two-day respite after returning to live and care for Mom five and half months earlier.

I was physically and emotionally exhausted; I desperately needed to get away. I was counting on the person who was soon to be in complete legal control of Mom’s care, and who lived just a few miles down the road, to be close by in case Caroline, our angel care partner, needed support while I recharged my batteries.

But as many care partners learn to their dismay, relying on others often leads to disappointment, anger, resentment, and the feeling you’re drowning. I was both furious and at a loss when I discovered the back-up I had hoped for would not materialize because the person in question was going to Mexico on vacation. If I didn’t get a break, I would suffer a break – I knew that for sure. I decided to cancel my away time, but also have Caroline come for a “tag-team” weekend. It was the best solution I could come up with under the circumstances.

As many things do, it turned out to be a blessing in disguise.

Over the weekend, Caroline, Mom and I shared some lovely moments including an Easter egg hunt during which we hid, found and ate chocolate eggs (not necessarily in that order!). I filmed and photographed some of the fun, which reminded me of my childhood. I am truly thankful to have these memories, though I still sometimes struggle with anger toward family members who failed Mom and me, and worse, actively vilified me and, incredibly, did their best to make my life miserable. I’ve heard the same kinds of sad stories from other carers worldwide — a situation that makes being a care partner even more difficult than it already is.

But I don’t want to dwell on that “bad karma.” There’s no use being bitter and twisted because of someone else’s unconscionable behaviour. All it does is give them more power, which is of course what they seek. Instead, I want to celebrate having brought my mother joy and myself healing while we lived with her dementia. The road was extraordinarily difficult for both of us, but it was worth it in the end, and I have no regrets.

I hope you like this three-minute video of our 2012 Easter egg hunt. If you are a care partner to someone who lives with dementia, I also hope you are inspired to create moments like these filled with life, living and the people you love.

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Activities, Inspiration, Life & Living, Videos

team of four elder swimmers with an average age of 90 breaks world record

The four swimmers (aged 86, 89, 92 and 93) who are the subjects of the inspiring video below broke a world record in a 200-meter freestyle relay in which they each swam 50 meters. If that isn’t inspiration enough, one of the two women on the team was unable to attend the previous year’s event because she was recovering from a broken neck at the time. Asked what kept her going, she responded: “Swimming!”

If you think this post has nothing to do with dementia, you’d be wrong. Exercise and attitude are important factors in staying healthy as we age, particularly with respect to boosting brain power. Here’s what Canada’s ParticipACTION program says:

“Physical activity is protective against the onset of dementia and slows its progression. The deterioration of the brain’s prefrontal cortex and hippocampus, which play important roles in complex thinking and memory formation, is usually associated with dementia. Luckily, these two areas are very responsive to physical activity, and tend to be bigger in size among people with higher fitness levels. This means that by constantly stimulating your brain through physical activity, you can effectively extend your years of good mental health.”

It’s equally important for people who live with dementia to stay physically active and to engage with life for as long as they possibly can. Here are 101 activities you can do with your dementia care partner. Activate!

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Advocacy, Antipsychotic drugs, Love, Music

my wild irish rose


St. Patrick’s Day was a special day for Mom, not just because she loved Irish music, but because she was named Patricia, partly in honour of St. Patrick. This post is to honour her, her love of music, her love of all things Irish, and her joyful spirit–she was the life of the party for most of her time here.

The two-minute video also contains a powerful message with respect to the inappropriate use of antipsychotic medication to chemically restrain people who live with dementia. I hope you take a moment to reflect on the message, and even better to take action! I also invite you to compare Mom’s demeanour in this video, which I recorded in June 2014, with the one I took less than two years prior in March 2012 as she was getting ready to go to the Georgeville Neighbours’ Lunch.

Happy St. Patrick’s Day 2017. (P.S. 40 Seroquel side effects) 

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Hope, Joy, Love, Music

alzheimer disease helped my mom play the piano

I’m lucky. When I miss Mom, I can go back to joyful times we experienced together and relive them, as if she were still here. I’m glad we did the things we did in the moment, and I’m doubly glad I preserved them in images, sounds and words that can now be shared.


Flashback December 21, 2013: “Do you want to try playing Ms Patti?” Eric the Piano Man questions, gentle yet intent. The benefits of music for people who live with Alzheimer disease are well known, so I’ve hired a musician to help with Mom’s care.

“I don’t think I can. I don’t know how,” Mom replies. She adores singing, knows the words to hundreds of songs, still remembers them mostly. But she never learned to read music or play an instrument. Now she’s 85 and in the late stages of Alzheimer disease. Her language skills are beginning to evaporate – she rarely completes a sentence anymore. It seems unlikely she should be able to play the piano at this stage, even as she’s coming ’round the mountain.

Eric is undeterred: “I think you can Ms Patti. Do you want to give it a try?” He is soft yet insistent, slyly shy in the art of persuasion. Angels are like that. They ambush you quietly, make you believe you can do things you think you can’t, then disappear without a trace once you’ve conquered the unconquerable. 

Eric sits at the piano; Mom reposes in a big old blue armchair beside it in the living room of The Home. I’ve placed the chair slightly off right angles to the piano so Mom faces Eric’s profile as he plays. When he turns to sing with her, long-buried lyrics float to the surface of her receding memory, dance to his tune and in the process create a magical duet. Like Caroline and Gaby (the other earthbound angels with whom we’ve crossed paths on this Alzheimer’s journey) Eric connected with Mom within seconds of meeting her. The instant bond grew quickly through their shared love of music. She trusts him. He might just succeed in convincing her to play.

This is our third weekly rendez-vous and things are going well. I knew Mom would love this “music therapy” just as she does Thursday morning sing-alongs, but I never dreamed just how much happiness private sessions would bring her. Seeing her transformed by the achievements she experiences as she sings with Eric is so moving I can hardly find the words to describe how grateful I am — and now she may play!

“Do you want to try Ms Patti? Eric persists.

“I guess I could,” Mom relents. She’s always been the type to grab life by the horns. I help her from the armchair and slide her onto the bench beside Eric. She sits for a minute, stroking the tops of her legs up-and-down-up-and-down-up-and-down as people with Alzheimer often do. It’s almost like a meditation. Or an endless prayer.

Finally, Mom lifts her right hand and touches the piano, tentatively at first then with increased confidence, clearly enjoying the feeling. She lifts the other hand. Sets her fingers down one after the other. I notice the contrast of her bright pink nails against the white and black keys.

Eric anticipates her next moves and improvises alongside her. The result is lopsided and quirky. The notes (even to totally unmusical me) are disjointed. There’s no rhyme or reason to the melody. Yet I am captivated. My heart is in my throat. This haphazard bit of music is among the most poignant I’ve ever heard: a unique creation in this special time and space, a piece that has never been played before and will never be played again. It was born of Alzheimer’s disease, unconditional love, compassion, determination, empathy and courage: an ode to the fully realized potential of a single moment, a tribute to that which will soon be gone and forgotten.

There is great beauty in that. Great beauty indeed.

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Humour, Joy, Memories, Music, Videos

mrs brown and my mom had lovely daughters

Have you ever felt as looney as a tune?  We did. All the time! Mom, Eric and I made a fine looney tune trio, especially when we were  unplugged.

Here’s an excerpt from Mrs. Brown You’ve Got a Lovely Daughter (and mother!), which we also sang accompanied by piano. This particular post is to honour my birthday January 28, 1956, which this year I will be marking for the first time ever without my mom in this world. That’s something to think and feel about.



Oh yeah, and just for fun and because Mom would have loved it:


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Care Partnering, Hope, Humour, Joy, Love, Memories

happy big bird day!

May 3, 2012: Caroline and Mom after they had just hung out the laundry. The colourful napkins they’ve carefully pinned on the line make me think of Buddhist prayer flags.

I didn’t know I was shaking hands with an angel when I met Caroline (aka Big Bird; pictured above with Mom), on October 31, 2011, my late grandmother’s birthday, and the day after I arrived back at Mom’s place to live with and care for her full time.

Caroline knocked at the door at 13:00 precisely. I soon learned it was her habit to be punctual. Never early, never late. Always on the stroke of the appointed hour. Initially, she came to us on Monday and Wednesday afternoons; someone else came on Tuesdays and Thursdays, and yet a third person on Fridays; all of them from 13:00 to 18:00.  The rest was up to me.

Big Bird and I connected from the first minute of the first day, just as she had bonded with Mom immediately when she had begun working with her six weeks before my return. They made a somewhat comical pair: tall, lithe, 33-year-old Caroline, and short, stocky 83-year-old Mom. Their 50-year age difference made no difference at all. They loved each other from the get-go.

When an angel walks into your life, you do everything you can to keep her there. Over the next several months Caroline and I fought to have her spend more time with Mom and me. Thank God we won that battle! By the end of January, 2012, Caroline was with us from 09:00 to 18:00 five days a week. We were so blessed. Caroline accompanied Mom through breakfasts, shower times, walks, trips to the grocery store, visits to the bathroom, clothes shopping, flower arranging, snow shoveling, birdwatching, leaf raking, gardening, watering, fire lighting, lunches, laundry hanging and whatever else was on the agenda with grace, compassion and the utmost care. The did everything together, and laughed and giggled their way through life’s ups and downs like a couple of schoolgirls, despite the hardships and challenges of living with Alzheimer’s disease. Of course there were difficult times–many–and we all cried separately and together on many occasions as well. I was/am profoundly grateful for all of it.

The three of us formed an amazing care partner team. We tackled chills and spills; we celebrated small victories. None of us could have done it without the other two. Our triad was and still is a testament to feminine strength and wisdom. January 12 is Big Bird’s birthday. Here’s to her with a rogues’ gallery featuring Mom and her during various adventures — I know it will bring a smile to her face and perhaps a tear to her eye.

I love you Big Bird! My brain may one day forget all you did for Mom and me, but my heart will always remember. Happy Big Bird Day XOX Punkie

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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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Care Partnering, Poetry

blessings and curses

My Alzheimer’s story is full of sorrow, joy, love, healing, despair, grief and more. Each day is a roller coaster of blessings and curses – all to be lived, celebrated, overcome and finally surrendered when everything passes, as everything inevitably does.

This poem is about all of that. You may listen by clicking on the player and/or read below.

blessings and curses

a poem by punkie

great expectations tossed in the ditch
come hell or high water, life is a bitch

it fails to deliver what we expect
blessings and curses are all that we get

kittens and kiddies, ribbons and bows
sadness and pain, heart-wrenching blows

curses and blessings, the double-edged sword:
soar like an eagle, be somebody’s ward

we look to the heavens, fear fires below
pray up above is the place that we’ll go

blessings and curses, the two-sided coin:
unending pleasure, a kick in the groin

Jesus and David, prophets and kings
Mohammad and Buddha, and hymns we all sing

angels and demons in huge tugs of war
fashion the future, guess what’s in store?

curses and blessings, joy followed by woe
it’s important to learn to go with the flow

puppies and newborns or slaps in the face
in the hereafter, we’ll have it all aced

still in the meantime, life must be lived
blessings and curses, to each other we give

now ’tis the season, to decorate trees
open up presents, fall to our knees

curses and blessings up the chimney they dash
like prancer and dancer poof! gone in a flash

a new year will soon gladden our hearts
bring tears to our eyes, let fly cupid’s darts

more curses and blessings lie in the wait
being human, on earth, this is our fate

expect what you get, not what you want
put a spring in your step, walk with a jaunt

your curses one day will turn to delight
with blessings to all, and to all a good night


© 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.

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