Advocacy, Antipsychotic drugs, Humour, Videos

big pharma, big money, big crime

This Stephen Colbert bit is about the opioid crisis. But it could equally be about the polypharmacy crisis in older adults. Or the antipsychotic and psychotropic crisis in long-term care facilities. It’s all one and the same issue. #BIGpharma #bigMONEY

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Drug money. Food for thought.

tragically wrong and hilariously funny: john oliver tells the truth about drugs, docs and big bucks

10 seldom-mentioned “side effects” of using antipsychotics in long-term dementia care, which are also 10 more good reasons we should #BanBPSD

the worldwide case against giving antipsychotics to elderly people living with dementia

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Advocacy, Inspiration, Life & Living, Love

imagine how much suffering could be spared!

My friend Lorrie B. is an amazing writer, editor, translator and primary care partner to her parents, both of whom live with dementia. Lorrie is also an insightful blogger who documents her care partnering experiences here: Unforgettable.live.

Like me, Lorrie is also insatiably curious, and, since becoming her parents primary care partner, has done extensive research related to dementia (as have I!). Despite having read reams and reams of dementia-related stuff, Lorrie and I agree the article referenced in this post is one of the best we’ve come across on living with dementia. Lorrie left this comment:

Wow. I’m with you, Susan, this is one of the best articles about “living with dementia” that I’ve read in the past three years of scouring the media. Such a beautiful and valuable perspective, level-headed and lyrical. I saw both my parents in many of the instances that she mentions – if we had more of this thinking, imagine how much suffering could be spared! Honestly, if people with dementia can teach us to think more with our hearts than our heads, it would benefit everyone to be in their world and feel the power of love beyond the brain. Thank you so much for finding and sharing this.

Lorrie’s with me and I’m with her – we’ll all benefit and suffer way less when we feel the power of love beyond the brain.

You said it Lorrie B.!

#FightTheGoodFight #WeCanCareBetter

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you said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

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One of Lorrie B.’s blog posts: Lesson #29: Hope Springs a Kernel

https://myalzheimersstory.com/2018/09/21/3-excerpts-from-the-best-article-on-dementia-i-have-ever-read-and-a-link-to-the-full-meal-deal/

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

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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.”

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“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.”

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“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.

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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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Advocacy, Death & Dying, Life & Living

it wasn’t what she said, it was how she said it: august 10 & 11, 2016

It was fairly easy for me to tell when Mom had been inappropriately and/or overly medicated.

She was either “asleep,” or her whole demeanour changed, and/or she simply couldn’t say what she wanted. When I say she couldn’t, I mean in a physical sense. Getting her words confused and talking gobbledygook was one thing, that was a “natural” brain to mouth communication short circuit of some kind.

But slurred speech and the inability to clearly articulate words that could be more or less understood, even though they may or may not have made sense, were different things entirely. They were drug induced, and it was easy to know when she was medicated and when she was not.

On August 10, 2016, a week before she died, it was clear Mom had been given more drugs than usual for some unknown (to me at least) reason. You don’t have to be a rocket scientist to tell the difference.

Here’s Mom and I conversing on August 9:

Now listen to her speech the very next day (August 10) when, even though I’m able to decipher her meaning, the effects of the increased medication are unmistakable:

Now compare this with her capacity to speak two days later, on August 12:

I could deal with the aphasia. I could deal with her thought processing challenges. I could deal with the stuff associated with Alzheimer disease and the resulting dementia.

But I couldn’t deal with my mother being inappropriately medicated, neglected and abused in the multiple ways she was. Sometimes it was just too much for me to witness on top of everything else. After the experience of August 10th, I couldn’t visit on the 11th. I just didn’t have the strength to do it, so I stayed away for both our sakes. I’m so grateful I did because it gave me the wherewithal to be with her for five of her last six days.

my mom is a question mark: august 9, 2016

the beginning of the end: july 26, 2016

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Image copyright: christingasner / 123RF Stock Photo

Advocacy, Information, Toward better care

alzheimer society nails language guidelines

The Second Edition of the 20-volume Oxford English Dictionary (OED) contains full entries for 171,476 words in current use, as well as “around 9,500 derivative words included as subentries.” 

But language evolves. The third edition of the OED is a work in progress; it’s updated quarterly.  More than 1,100 new words, senses, and subentries were added in its January 2018 update. About the same number were added in September 2017. Examples of new words, senses and subentries abound. As recently as 15 years ago, for example, the word “text” was a noun only; now it’s also a verb.

Similarly, the noun “sext” was previously defined as “A service forming part of the Divine Office of the Western Christian Church, traditionally said (or chanted) at the sixth hour of the day (i.e. noon).” These days, it may also be “A sexually explicit photograph or message sent via mobile phone.” I wonder if that’s progress or regress? “Sexting”—that is the act of sending such a message—is now a verb as well.

Meanwhile, 47,156 other words have become obsolete. I was unable to find examples; perhaps they have been deleted as well as obsolete-ed.

More important than their sheer number is the way words influence how we live. How we describe our own and others’ experiences of life changes as our understanding and perceptions of the world shift. Words play a huge role in that. Consider these examples:

  • Rape “victims” have become rape “survivors.”
  • The terms “African-Americans” and “Black Americans” have replaced racist slurs.
  • “Climate change” more accurately depicts what underlies our unpredictable weather conditions than does “global warming.”
  • Today’s youth may not know that cancer was called “the big C,” and was mostly spoken about in whispers, if at all, before they were born.

It’s hardly surprising that the words we use to describe Alzheimer’s disease and related dementias (ADRD), and the experiences associated with them are also changing, and will no doubt continue to change as our understanding of ADRD broadens and deepens.

I feel strongly that the words we use and the labels we attach to people who live with dementia (PLWD) define how we perceive and treat PLWD. Words shape the way we think. The way we think determines the ways we act. The ways we act impact our lives and the lives of those around us.

The words we use, and the ways we use them are important.

That’s why I was delighted when the Alzheimer Society of Canada released new person-centred language guidelines in November 2017—guidelines which, for the most part, hit the nail on the head. The Society frames the need for change like this:

“Language used to describe dementia has historically been largely negative, focusing on the losses experienced by the person living with dementia. While these losses are real, this negativity has contributed to the development and persistence of stereotypes and approaches to care that focus on weakness rather than strength, illness rather than wellness and victims rather than whole persons. This approach influences how others view dementia, and can add to the stigma and discrimination experienced by people living with dementia and their caregivers.”

I was particularly pleased to see lots of references to the wording and suggested language around the perfectly reasonable reactions and normal behaviour of people who live with dementia to sets of circumstances that would cause anyone to respond in similar ways. Take, for example, this screen shot from the Alzheimer Society’s language guidelines PDF, which may be downloaded here:

I’m over the moon that the Alzheimer Society of Canada rejects the label “wandering,” and suggests alternatives like these.

I’m ecstatic that the Alzheimer Society of Canada says labels such as “acting out,” “aggressive behaviour,” “agitation,” “challenging behaviour,” “difficult/problem behaviours,” “hoarder/hoarding,” “violent,” “screamer,” “sundowning/sundowner,” and the like, suggest that “the behaviour is a result of a problem with the person,” and “do not support a person centred response.”  The publication of these language guidelines by the Alzheimer Society of Canada is a massive step in the right direction. It validates and vindicates what I and others have been saying for years about so-called BPSD and antipsychotic medication.

Thanks Alzheimer Society of Canada, for hitting the dementia language nail on the head.

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Advocacy, Real life, Toward better care, You said it!

greg steven elofson says: perspective is important

When I posted “the shocking truth behind this tragic video” on LinkedIn, the first comment it generated reframed the whole situation in less than five full lines, and in a way that made infinite sense to me. I think it will make huge sense to you too.

“Perspective is so important. A more accurate story lead-in would be: “These two people have been locked up against their consent for prolonged periods of time, rarely seeing the light of day, likely left with unmet needs for privacy, palatable food, and ordinary companionship. Predictably, they have done what we see prison inmates do with regularity–fight. Except these unfortunate people have committed no crimes.”

You said it Greg!
And I would add: They’re jailed because they live with dementia, a condition we stigmatize and haven’t yet (for the most part) learned to treat humanely.
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You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network. 

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Advocacy, Real life, Toward better care, You said it!

stephanie frederick says: learn a different language

I decided to create a new space on MyAlzheimersStory.com to preserve the useful information, inspiring thoughts, short stories, good ideas and inspiring quotes people share. This is the first one thanks to a LinkedIn connection. I’m calling this space “You said it!”

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I posted 10 ways to reframe “refused medication” on LinkedIn and asked “Can changing the words we use change the way we think about people who live with dementia?”

Stephanie Frederick, M.Ed., RN said:

“I’m an (independent) RN Patient Advocate. My (dementia) patient-client and I were recently “fired” by the PCP (primary care physician) because I refused a medication the client didn’t want (“I feel so drugged!”). It was the 3rd added psychotropic medication on the same day the other 2 medications were increased. The physician couldn’t convince the patient, and he was very angry that I agreed with the patient-client. We were given 30 days to find another provider, which we gladly did. Thank you for helping healthcare practitioners and caregivers to learn a different language!”

You said it Stephanie!

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