Hope, Inspiration, Poetry, Videos

pinkie pattie, pinkie punkie & pinkie pia’s peace day poem

Coincidentally, World Alzheimer’s Day is also the United Nations’ International Day of Peace.

Mom, Pia Roma and I made this video on September 21, 2009, to mark #PeaceDay. I wore a green ribbon around my left wrist in support of the revolution that was happening in Iran that summer.

Mom had been showing symptoms of Alzheimer disease since 2006, and she momentarily forgot Pia’s name when we were making the video. But she clearly articulated the meaning of peace in a few words: “Love your neighbours in all the countries,” she said.

What a tragedy that so many people, including too many world leaders seem to have forgotten what peace means, when my mom, who lived with dementia, knew it very well until the end.

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Activities, Inspiration, Videos

no, it’s not a trick question, and the proof is in the video

Admittedly there are people out there who insist on wallowing in misery, and seeing the glass half empty instead of half full. They whine and bitch and complain about everything all the time.

Are you one of those? I thought not. I bet you chose “a) dance” just like I did. Yay!

I believe that, given the opportunity, most people who live with dementia would make the same choice. Because just like most of us, they would rather dance than be bored to tears or drugged with antipsychotics and left to sit around like zombies.

But you don’t have to take my word for it; see for yourself:

At a loss for things to do besides dance? Here’s a starter list of 101 activities you can enjoy with someone living with dementia.

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Image copyright: antonuk / 123RF Stock Photo

Activities, Inspiration, Life & Living, Videos

going out dancing

Living well, eating well, and getting plenty of exercise are the best ways of staying healthy overall, aging well and delaying or even staving off  Alzheimer disease and other dementias.

Walking is among the best exercises you can do (I walk for about an hour and a half each day), but more fun than walking in my opinion is dancing – especially when you do it in a group. It’s energizing and fun. Plus, learning something new like these seniors are with the hip-hop moves in this video helps create new pathways in the brain, which is thought to be a great way to develop “brain muscle.” AND, If that weren’t enough exercise like this releases endorphins that help people maintain a positive attitude.

So it’s all good. No downside. Yay for music. Yay for dancing.

By the way, can you guess which one of these hip-hop dancers has dementia?

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Joy, Love, Memories, Music, Videos

10 lessons from pinkie patti and the dancing bear

mom-and-dancing-bear-smiling

Flashback: On a bright, crisp, sunny day in February 2012, Mom and I went to a small winter fair “in town.”

There were tents, skating rinks, barbecues, music, and lots of children. Mom loved children. I remember her telling the story of how ducks skate on frozen lakes to my two young cousins when they were little girls. The three of them  snuggled in a big armchair as snow fell outside. They giggled and laughed at the thought  of drakes on skates, slipping and sliding on the icy surface outside.

When we came upon the bear mascot at the winter festival, Mom grabbed his paws and “waltzed” with him to music coming from a nearby tent. As I filmed her leaving his embrace, she  encouraged a pair of little girls to take her place in his arms; they were about the same age my cousins were when she told them about duck Ice Capades. The sheer delight Mom took in dancing and sharing her joy with the children made my heart burst with tenderness and love.

Here are ten lessons I took away that day:

  1. creating space for mom to engage with life was one of the best things I could do for both of us
  2. magic is accessible to everyone, and it’s usually free
  3. hugs and innocence are “ageless” and timeless
  4. small things make a big difference
  5. small things make an EVEN bigger difference when things seems hopeless
  6. dancing bears provide better medicine than many doctors
  7. we are meant to be in community; we belong together
  8. Alzheimer’s is as much a “life sentence” to love and laugh and live right now as it is a death sentence to die some day in the future. Life itself is a death sentence. Why die before we’re dead?
  9. using technology to preserve memories is a smart thing to do
  10. joy is a gift as well as a choice and a reward

Watch the video and see if you agree:

 

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Activities, Advocacy, Joy, Life & Living, Music, Toward better care, Videos

dancing girls bring joy to world

Elder women dancing

This is what eldercare should be about: dancing, moving, engaging with life. It should NOT be about being drugged for convenience, and physically restrained in reclining chairs in front of daytime TV.

Not much else to say really. The video speaks for itself. That may be why, when it was first posted in April 2016, this joyful clip was viewed 26 million times in 12 days: proof that people want person-centered care!

Joy, Life & Living, Love, Videos

when mind and body fail, look for the dancer inside

Alice Barker chorus line dancer
Chorus line dancer Alice Barker in her youth

November 23, 2015: Mom was determined to get up and move today. I was glad I was there to hold her hands and shuffle several circles around the drawing room with her.

“You’re walking so well Mom,” I said, remembering how she used to love to dance.

“I know,” she said. “I’m good at walking.”

We also sang and talked this afternoon. When I look at her now, I want to enable her to live every moment as fully as she can. I also see her as she once was, and know she has a had full life with many joys and sorrows. I celebrate that too.

When I got home this afternoon, I found a message in my inbox from my friend Rebecca; there was a video attached. It’s of 102-year-old former chorus line dancer Alice Barker watching herself dance. In the video, she explains why they called her “Chicken Little” in her heyday.

I notice her lovely smile and her beautifully manicured nails as she lies in the hospital bed, and I’m grateful for others like me who believe in giving their elders as many small pleasures and moments of joy as possible on the last leg of their journey.

A voice off camera asks Alice Barker how she feels about seeing herself dance so long ago.

“Making me wish I could get out of this bed and do it all over again,” she replies.

 

Of course I cried. Who wouldn’t?

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Humour, Joy, Memories, Music, Videos

mom and i love dancing. always have. always will.

Susan and Patti's dance video no YT

September 9, 2015: To honour Mom’s 80th birthday in 2008, we danced. Everywhere. All summer long.

Inspired by one of Matt Harding’s viral videos of dancing around the world, we created a similar video in our world. It was joyful. Something we could do together.  At the time, Mom was two years into her diagnosis.

Today, seven years later on September 9, 2015, Mom and I walked twenty-five “baby steps” together. She held onto the fence with her right hand and I held her left hand in mine. It was joyful. Something we could do together.

September 27, 2015, is Mom’s 87th birthday. We will find a way to dance on that day too, in our own way, no matter how things are – good or maybe not so much. If you know or care for someone living with dementia, please reach out, take their hand and help them engage life in whatever way they can for as long as possible. They will be blessed. And so will you.

Here’s Matt’s video, the one that that inspired ours (as of today, it’s had close to 50 million shares 🙂 ):

Special thanks to Michael A. Horvich for the blog post that inspired this one.

September 27, 2016: I didn’t know it when I wrote this post in 2015 that it would be the last time we celebrated your birthday together, Mom. I love you and I miss you, and I hope you are dancing wherever you are ❤

https://myalzheimersstory.com/2016/09/26/dont-rest-in-peace-or-sleep-deceased/

https://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

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Joy, Life & Living, Love, Videos

when mind and body fail, look for the dancer inside

 

Alice Barker chorus line dancer
Chorus line dancer Alice Barker in her youth

When I got home this afternoon, I found a message in my inbox from my friend Rebecca; there was a video attached.

It’s of 102-year-old former chorus line dancer Alice Barker watching herself dance.

In the video, she explains why they called her “Chicken Little” in her heyday.

I notice her lovely smile and her beautifully manicured nails as she lies in the hospital bed, and I’m grateful for others like me who believe in giving their elders as many small pleasures and moments of joy as possible on the last leg of their journey.

A voice off camera asks Alice Barker how she feels about seeing herself dance so long ago.

“Making me wish I could get out of this bed and do it all over again,” she replies.

Of course I cried. Who wouldn’t? Continue reading “when mind and body fail, look for the dancer inside”

Humour, Joy, Music, Videos

amazing amazing grace with guitar

Amazing Grace w guitar

One day in the summer of 2011, Mom, Caroline and I were having a particularly bad day. EVERYTHING seemed to be going wrong. All three of us were sad and down. The day before, my friend Jessica had shared a link to Amazing Grace. A different version.

I put my laptop on the island in the kitchen and cranked up the volume. It wasn’t long before Mom, Caroline and I were singing, clapping and dancing around the kitchen. Mom loved to move. Now she is free to fly. She wouldn’t have wanted us to get too stuck in grief for too long. She would have thrown herself party.

Here’s to my mom’s amazing grace, fierce spirit and sense of fun, with guitar, mandolin, accordion, harmonica, fiddle and horns. Oh yes. Life is meant to be sung and danced. She left this place on August 17, 2016. But even in death, her light shines.

 

 

Amazing grace how sweet the sound
That saved a wretch like me.
I once was lost but now I’m found.
Was blind but now I see.
‘Twas grace that taught my heart to fear
And grace my fears relieved.
How precious did that grace appear
The hour I first believed.
When we’ve been there ten thousand years
Bright shining as the sun
We’ve no less days to sing God’s praise
Then when we first begun.
Amazing grace, how sweet the sound
That saved a wretch like me.
I once was lost, but now I’m found.
Was blind, but now I see.

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Joy, Life & Living, Love, Memories

life is a chorus line if you believe you can can

pink-can-can-dancers-cropped-1

September 25, 2014

Dear Mom,

This is the second of two letters to honour your 86th birthday on September 27, 2014, and remind us of the important things in our lives. The first one was about swimming. This one is about dancing.

We’ve done a lot of it. Dancing I mean. Individually and together. We both love it. We are the Ginger Rogers and Fred Astaire of Alzheimer’s. Okay, maybe that’s a bit of an exaggeration but what the hell it’s your 86th birthday. Being a tad “over the top” won’t kill us.  Life often feels to me like a series of random accidents from which some of us recover sometimes and some of us don’t ever. We’ve done a pretty good job of getting through the rough patches so far. More important than the fall is that we’re still up and moving, if not in body then surely in spirit. Our first documented tandem dancing adventure was in honour of your 80th birthday in 2008. I had stumbled on Matt Harding’s worldwide project and thought — you know how I’m always getting crazy ideas — hey! that’s something Mom and I could do together!

We created Patti and Susan’s dance video over the course of the summer:

We two-stepped our way through the Christmas season in 2011/2012. Here’s you and Judy’s husband John cutting the rug in their kitchen:

In February 2012 we met up with a dancing bear at a winter festival in Magog. Guess what? You made a new friend. See more by clicking on the video link of you and the dancing bear.

patti-and-dancing-bear-video-pic-for-blog

On August 4, 2012, we celebrated the Hermitage Club’s white-themed centennial. I hadn’t expected to be there with you, but I knew it would be your last big party and you wouldn’t have missed it for the world. So there we were at a wonderful table in a magical setting. We clowned for the camera and Bev and I discovered we had the same dress:

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You had to “go to the peeps” at one point, and on the way to the ladies room we ran into the chef. Here’s what happened:

When the music started in earnest, we got up to dance and we didn’t stop until our legs gave out.  I’ll never forget it, or at least I won’t until I do. Thanks Mom, for dancing your last dance with me.

Happy birthday ❤

Love,

Punkie

XOX

September 25, 2014

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