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, Antipsychotic drugs, Music, Videos

she couldn’t sing because she was sedated

My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).

These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.

When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:

Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:

a magical musical alzheimer gift

And this one was just four days before Mom died on August 17, 2016:

one last sing-along: august 13, 2016

I miss you Mom.

50 more pics that prove my mom was neglected and abused in long-term care

four years later is too late for my mom. but it’s not for others.

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia
  1. Love
  2. Hope
  3. Resilience
  4. Courage
  5. Determination
  6. Ingenuity
  7. Creativity
  8. Music
  9. Connection
  10. Caring
  11. Compassion
  12. Relationships
  13. Interdependence
  14. Empathy
  15. Faith
  16. Curiosity
  17. Laughter
  18. Kindness
  19. Generosity
  20. Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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Copyright: kalbi / 123RF Stock Photo

Advocacy, Inspiration, Life & Living, Love

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

Sometimes you come across something that captures everything you want to say so brilliantly that it literally takes your breath away, and makes you weep in gratitude.

Sallie Tisdale’s article Out of time: the un-becoming of self, in the March 2018 issue of Harper’s Magazine, is one of those somethings. It says in five pages what I have tried to articulate in the more than 600 pages on this blog, in workshops, webinars, conversations and comments, with mixed success as best. Yet Tisdale does it beautifully, succinctly and poetically.

Here are three important excerpts from her compelling piece:

“The stark fact is that dementia is incurable, progressive, and fatal, but here is the surprise: in the company of [people who live with dementia], one finds peace and unquestioned love in at least as much measure as in the rest of the world. I watch my clients navigate each day’s puzzling details. I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder. Being with a person who has dementia is not that different from being with a person who doesn’t share your language. It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.”

~~~~~~~~~~~~~~~~~~~~~~~~~

“The fact that my own me-ness persists is obvious, and yet a persistence of identity is one of the last things we expect with [people who live with dementia]. They seem different to us; mustn’t they be different to themselves? The spate of recent research considering how a person with dementia actually feels tells us no, not really. People know they have a memory impairment, but they feel themselves to be the same person, even in late stages of the disease: “I’m like a slow-motion version of my old self,” says someone with dementia. The possibility of pleasure, let alone contentment, for this person is barely acknowledged. A team of researchers called our current vision of dementia the tragedy discourse. Another group notes that most researchers have shown “a stark disinterest in happiness,” and their assumption of distress is because that is “the only available lexicon for experience, the only available lens through which dementia is viewed.” Surveys have found that Alzheimer’s disease, the most common form of dementia, and cancer are the diseases that people fear the most. The communal response to dementia seems to invite only existential despair.”

~~~~~~~~~~~~~~~~~~~~~~~~~~

“Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. In a large international study, people with cognitive impairments were no less happy than healthy people. When family members are upset about a relative’s decline, certain it is a terrible experience, they are not always clear on who is suffering. My friend Kate’s mother had Alzheimer’s. She had always worn careful makeup, and she was uncomfortable leaving the house without it. But her makeup became exaggerated, almost clownish, and she refused Kate’s help. Looking in the mirror, she liked what she saw. Going out to a restaurant became, for Kate, “an exercise in my own discomfort, being willing to let her be as she was.”

The full article is here. I strongly encourage you to read it.

 

https://myalzheimersstory.com/2015/08/13/my-mom-still-counts-just-like-everyone-else-and-she-deserves-better-we-all-do/

https://myalzheimersstory.com/2018/08/10/my-mom-is-a-question-mark-august-9-2016/

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Life & Living, Music, Poetry

music from a tapestry of shared moments in long-term care

This piece of poetic prose called “Music” is from a collection entitled “A Tapestry of Shared Moments In Long-Term Care” by former Registered Nurse Karen Hirst.

~~~~~~~~~~~~~~~~

A sea of wheelchairs, walkers, easy chairs, an encasement of human form. Having been herded towards this place, they await their cue to rise and move towards their place at the supper table. Silence reigns within this place of mealtime ritual. Eyes stare out from emotionless faces, a spirit of uniqueness noticeably absent. Instead a sameness of scars from shared diseases they bear within. An aura of premature death hangs heavy.

Music starts. Irish fiddles, sing-a long favorites, dance band melodies of eras past and something changes.

Subtle at first….ears pulled alert, eyes that move between faces searching within the emptiness of this space for the source of a new sound. Very slightly at first, an uncontrollable drawing upwards of lips curling into a smile, a finger tapping out the beat on the arms of a walker, a toe exercising its remembered swirl on the dance floor, a hand and arm finding air beneath them as they take on the job of conducting the orchestra. Within supportive arms, each beat of music finds its expression through feeble legs as partners share their dance moves among the feet of encouraging onlookers.

The silence is broken. One is heard to speak words of praise for the dancers, one speaks directly to their neighbor of how nice it all is, one giggles, one remembers that they used to be a good dancer, played in a band, or sang in a choir. They all clap in united support for the bravery and prowess on the dance floor and unabashedly sing out the verses of remembered tunes.

Something has change within this space. No longer the collective herd but a gathering of individuals united in their love of the beat and tune. No longer spiritless forms but animated motion and activity radiating through the unique expression of their joy. No longer alone but connected through the universal language of music. No longer death but evidence of life finding its way to the surface, spreading out into this space and time.

The life giving force of music. Joy stirred by rhythm. Burdens lightened. Steps lifted higher with every beat. Memories surfacing of loved ones, of times spent together when the language spoken was understood by everyone.

Karen Hirst is a former Registered Nurse, who worked primarily in the field of geriatric nursing. She began her career as a Health Care Aide Instructor and held positions of increasing responsibility over several decades. She spent her final 16 years as a charge nurse at Fairview Manor, Almonte, Ontario. Now retired, Hirst writes on topics that interest her, and is actively involved in her community. This piece is from a collection entitled “A Tapestry of Shared Moments In Long Term Care.”

10 tips to make the most of music in dementia care

alzheimer disease helped my mom play the piano

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Advocacy, Inspiration, Life & Living, Music, Videos

the #CMAHealthSummit jam band featuring @Cmdr_Hadfield on guitar & vocals

It may seem like this post has nothing to do with dementia care advocacy, but it does, trust me. All will be revealed in the fullness of time…

In the meantime, enjoy former astronaut turned author and inspirational speaker Commander Chris Hadfield (on guitar & vocals) as he covers Piano Man with family physician Dr. Jeff Dresselhuis (on keyboards) and the #CMASummit2018 “jam band.”

https://myalzheimersstory.com/2014/06/03/a-magical-musical-alzheimers-gift/

https://myalzheimersstory.com/2016/04/09/10-tips-to-make-the-most-of-music-in-dementia-care/

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Advocacy, Death & Dying, Life & Living

one last sing-along: august 13, 2016

Mom was in bed when I arrived on August 13, but she was articulate, alert, responsive, and in good spirits, despite the fact that her speech was slurred just as it had been a few days earlier.

When I complimented her on her hair and told her she was beautiful, she took exception:

Mom’s feistiness meant it was a perfect day for Eric to come over. I called him immediately and then told her the plan:

Two caregivers helped me move Mom from her bed to her wheelchair, and I took her downstairs to have tea and chat with Shirley while we waited for Eric to arrive. We had ginger snaps, and talked about the weather.

Eric brought his guitar and we sang a whole whack of our favourite songs: Mrs. Brown You’ve got a Lovely Daughter, I’ve Been Working on the Railroad, Ain’t She’s Sweet, ’Til There Was You, Rock Around the Clock, Oh What a Beautiful Morning, Clementine, Somewhere Over the Rainbow, How Much Is that Doggy in the Window?, I Wanna Hold Your Hand, Mona Lisa, Goodnight Irene, and Would You Like to Swing on a Star? Mom knew some or all of the words to every one; I captured a few moments on video:

We were so lucky to have had Eric and his healing music during the last four years of Mom’s life. I will be forever grateful for that.

like puppets on a string: august 12, 2016

the beginning of the end: july 26, 2016

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Life & Living, Memories, Music, Videos

alex george fiddles “good-to-go” message from mom & universe

The universe’s messengers come in all shapes, sizes, colours, forms, genders, and ages. They may be living beings, forces of nature, or inanimate objects. They could be deaf, dumb and blind, ten feet tall and/or incredibly small. Some dance. Some are as vast, and deep as the ocean. Others twinkle like the night sky.

I stumbled upon one playing the fiddle on his parents’ porch in Almonte, Ontario, on June 16, 2018, at about 4:15 p.m.

Actually, that’s not quite true. One rarely “stumbles upon” a messenger from the universe, although it may indeed feel random to either or both the messenger and the “messengee” if their intuition isn’t fully switched on. But the universe’s intentions are clear, and its delivery is unmistakably deliberate and obvious when one is paying attention, which I was, as usual.

I had planned to attend a prior PorchFest de Mississippi Mills session at 3 p.m., but I lay down for a 10-minute nap and overslept. I awoke just in time to make it to 17-year-old Alexander George’s performance, one of several taking place around town at 4 p.m., but I was delayed when I stopped to talk to a stranger along the way to Alex’s gig. He was playing on the porch of his family home, which, coincidentally, is five doors down and across the street from the little house I had just purchased two days before.

As I strolled past my new place, I wondered if I had made the right decision. Two weeks later, I would abandon Quebec’s Eastern Townships, where I had spent my childhood, and which had always been “home” no matter where I travelled in the world. Mom had lived in the big red brick house on the hill on the Georgeville Road for 40 years, and had died not far from it in August 2016. Will she know where to find me after I move? I was full of grief at the prospect of leaving her, even though she was already gone. I tried hard to release my sadness. Enjoy the afternoon. Don’t spoil it with dark thoughts. My positive self-talk produced mixed results.

Two young girls were selling muffins and lemonade beside the Georges’ house. I bought a drink, and gave them a .50-cent tip. Their eyes grew wide. “Thanks!” they said in unison. I meandered down onto the sloping lawn where people were gathered in small groups under the shade of trees and large bushes to take the edge off the heat. I sat down alone on the grass. Alex began to play what must have been the third or fourth song in his set. The Tennessee Waltz. Tears sprang to my eyes, and streamed down my cheeks. Had they known in advance they would be called into action? Luckily, a lady sitting not too far away had tissues.

I first heard The Tennessee Waltz when Eric played it for Mom one afternoon in early 2014. I fell in love with the tune on the spot. Mom knew all the words of course, and I learned them quickly enough. How many times had we sung it together? Dozens. She beautifully, and me badly. It was one of our favourites.

Two-thirds of the way through Alex’s captivating interpretation, I somehow found the presence of mind to pull out my iPhone and push record.

Here’s a full version from Alex’s first (and undoubtedly not his last!) album, just as he played it on the porch accompanied by piano:

More about the hugely talented Alex George here.

https://myalzheimersstory.com/2018/01/25/the-beautiful-tennessee-waltz/

https://myalzheimersstory.com/2016/11/27/do-you-see-what-i-see/

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Hope, Joy, Love, Music

mom’s 2012 irish medley

 

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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Family, Joy, Love, Music

olivia singing to her great grandmother creates a beautiful moment of love and connection

Many things about the human condition are universal. Our ability to connect through music is one of them. Music is a powerful way to forge and strengthen bonds between people of all ages, faiths, races, brain health, genders, and whatever! Music, it would seem, is at the heart of our souls. I experienced the joy of music with Mom time after time and am so grateful to have learned as much as I did about its power as we lived with Alzheimer’s together.

The video clip below, of American teen Olivia Erway singing “How Great Thou Art” to her great grandmother is joyful and touching. Mom also knew this hymn, among hundreds of other songs. I was first introduced to it during the Thursday morning sing-alongs in ElderJail. I’m not a religious person, and, although I knew the words after awhile, I never did sing along to this song — kinda’ goes against my grain. That said, I appreciate the beauty of Olivia’s voice, and the power of music to build bridges across all kinds of divides.

Also, the video above reminds me of Australian Carol George singing to her “Nan.” Equally beautiful and touching.

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