Tag: laughter

Care Partnering, Joy, Music, Videos

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

My Alzheimer's Story

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

Hope, Joy, Love, Music

mom’s 2012 irish medley

My Alzheimer's Story

 

The Georgeville Neighbours’ Lunch was held (probably still is) the third Thursday of every month starting in late fall and running through to early spring. Mom usually went with her long-time friend Margery, who picked Mom up on her way to the event. Margery was a good friend to Mom. Good friends often become fewer and farther between for people who live with dementia.

When our angel Caroline joined Mom and I, she and Mom went to the Neighbours’ Lunches together. Sometimes I tagged along. The March 2012 lunch was on the 15th, two days before St. Patrick’s Day. Caroline helped Mom get “dolled up” in her best festive green gear, and before they left for the lunch Mom treated us to an impromptu concert in the living room. She didn’t remember all the words to the tunes, but that didn’t matter. It was such a joyful time. Mom sang beautifully and hammed it up, Caroline laughed so hard her cheeks hurt, and I captured what I could on my iPhone. (I’m so grateful for technology.)

By March 2012, Mom had lost her driver’s licence (the spring before), and she needed someone (either Caroline or I) to be with her all the time. She hadn’t been able to cook for herself, with the exception of making toast and tea, for more than a year. Nevertheless, she was still fully engaged with life and the people around her. In the video, you’ll see a puzzle on the table in the background, it’s a big-pieces jigsaw puzzle of Canada. We must have completed that puzzle 25 times during our last year together in her own home. Even Pia, Mom’s long-haired grey cat, got in the act.

I wish I could sing like Mom did. She knew hundreds of songs, a few of which I learned from her during her last years. She and I sang up until a couple of days before she died. Music saved our sanity; it also brought us both happiness and healing. I hope you enjoy this Irish medley as much now as we did in 2012. And oh yeah, Happy St. Patrick’s Day 🙂

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Hope, Joy, Life & Living, Videos

baby buddy: you get peed on, you get puked on, who wouldn’t want to do it?

My Alzheimer's Story

Mom ADORED babies. This would have been the perfect “activity” to help her feel joyful, give meaning to her life and help others at the same time while she lived in the early and mid “stages” of Alzheimer disease.

When I watched the video, it reminded me of this one in which 10-day-old wyatt met his great-grandmother for the first time for the first time (precious!).

Like combining childcare and eldercare, I think this is wonderful win/win idea that could really work and help give PLWD a sense of meaning and purpose if those things might be missing from their lives.

Your thoughts?

Furthermore, this is the way (with love, compassion, tenderness and humanity) we should treat elders living with dementia in long term care instead of like this.

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Hope, Inspiration, Poetry, Videos

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

My Alzheimer's Story

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

My Alzheimer's Story

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

Humour, Life & Living, Love, Memories

flute flies & love taps

My Alzheimer's Story

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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Family, Inspiration, Life & Living, Love, Real life

out of the mouths of babes come dementia truths

My Alzheimer's Story

Thanks to Leah Bisiani of Uplifting Dementia for sharing an encouraging story from Australia about a program there called Kids4Dementia. Her post on Linked in brought me to a story that made my heart sing. It said things such as:

“Attitudes and habits are notoriously difficult to change. Rather than waiting for [attitudes about dementia] to become entrenched, we decided to try to create them proactively among today’s children.”

The article included this touching video, which includes the young girl and the quote above at the very end:

It went went on to describe stuff we should be trying to achieve with adults as well as children to lessen the stigma around Alzheimer disease and other related dementias:

“Kids4Dementia is a multimedia dementia education program for primary schoolchildren.

Through an engaging animated story, real-life videos and fun activities, 10 and 12-year-olds learn that a person with dementia is still a person, and not someone to fear, laugh at or ignore.

Students learn how it feels to have dementia or live with someone with dementia, discover activities they can do with a person with dementia and how visits to care homes can be fun. Students also learn how to reduce their risk of developing dementia in later life.

Kids4Dementia [was piloted in] three schools in Australia. The teachers loved it, the students loved it, and importantly it worked. Kids4Dementia statistically improved students’ attitudes about dementia.”

Yay Kids4Dementia! Here’s hoping you go worldwide.

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Care Partnering, Family, Inspiration, Life & Living, Love, Real life

when love is a stranger

My Alzheimer's Story

When I saw Scott Taylor’s post, I had to ask if I might share it, and I was grateful when he agreed. Scott’s mom, Debbie Taylor, was diagnosed with dementia a few years ago. Her drift into it was gradual but constant, he says. Now she thinks he’s someone else. Here’s what he wrote about that:

August 24, 2017: After today’s visit with my mom, I was particularly reflective when I left. More so than normal. Some days are better than others and it’s definitely hard for me to see her like this.

She still doesn’t know or believe I’m her son. The dementia has made sure of that. But her relationship with the stranger she thinks I am is getting stronger. Heck, it’s a full-blown friendship now. She remembers details about my life, asks me how my business is doing, how things are going with writing. She hugs me and seems excited to talk to me.

You see, my mom and Steve Holcomb (the name and persona she has given me in her mind) are actually becoming quite close. We laugh, keep each other updated on life and just shoot the breeze in general. Sometimes that’s the best you get in a situation like ours. And you know what, that’s alright with me. It’s okay she doesn’t know my name. Because I think she feels my love. And that’s much more important.

All I can do is all I can do, and that’s to love her as the stranger she thinks I am. So that’s what I do. And I trust it’s enough for right now.

If you feel distressed because someone you love with dementia doesn’t recognize you, you might find these posts helpful: 20 great question to ask when a loved one with dementia doesn’t know you anymore and it doesn’t matter if they know you or not.

Scott Taylor is the founder and creative director of Colorpop, an art and design firm based in Tulsa OK.

He also is a writer and speaker, traveling around talking about empathy, vulnerability and developing emotional literacy.

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Joy, Life & Living, Love, Memories, Music, Videos

everyone should be helped to let the sun shine in

My Alzheimer's Story

Mom was taken from her home on November 16, 2012, (the day our best wasn’t good enough), and “placed” in a long-term care facility (LTCF).

Like every human being (whether they live with dementia or not), Mom deserved to be treated with dignity and respect and to be provided  ongoing opportunities to engage life in whatever way she could until the day she died. She loved to be active, involved, singing, dancing, and interacting with others. Her  lively spirit and sense of humour are captured in the videos below, taken on the morning of November 16, 2012, the day she went to the nursing home.

Sadly, Mom deteriorated more in the first eight weeks she was in LTC than she had in the previous two years. She was given increasing amounts of antipsychotic drugs (a form of abuse), and her care was neglected in many ways. The way she was treated is unacceptable. So was the treatment of Ran Shirdan’s grandmother, Lori Derkevor’s father, Sue Turner’s parents, and countless others worldwide.

We need to change the way we care for the elderly, particularly people who live with dementia, and particularly those in LTCFs. Most deserve much much better than what they’re getting. They should be provided the kind of love and support Caroline and I gave Mom when we lived with her in her own home.

Everyone should be pampered:

Everyone should be helped to let the sun shine in:

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Image copyright: jorisvo / 123RF Stock Photo

Love, Memories, Poetry

still flying those night flights

My Alzheimer's Story

This is a poem to remember August evenings, summer, travel, dreams, hope, death, grief, rebirth, longing, flight, sunsets, and my mother’s imagination and spirit which live on in me and which I hope will infect/inspire anyone who reads this and the words that follow.

 

still flying those night flights

copyright @2017 by punkie

three days before

the first anniversary

of my mother’s death,

i still fly the

night flights

to london

at sunset,

they leave

disappearing streaks

across darkening skies

like shooting stars

i watch later

after dusk

is just

a memory

and still i cry

every time

probably

always

will

 

The earlier poem is here.

© 2017 Susan Macaulay. I invite you to share this link 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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