stigma – My Alzheimer's Story

No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.

Lilly*, one of the first and most loyal followers of MyAlzheimersStory.com is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.

Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.

When I shared this with Lilly on Messenger, she quickly replied:

“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”

I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.

Here is her 2010 TED talk:

This short CNN piece combines live interview with clips from the movie:

I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:

“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”

I also found this wonderful video:

There’s a great article on Asperger and creativity here, and another interesting TED talk called Asperger’s: Not Being Afraid Anymore here, and one on meds here. More on girls with autism spectrum disorder here.

People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.

Doing this research was helpful and enlightening for me. I hope it is for you too.

*Not her real name.

http://amazingsusan.com/2018/12/23/see-the-me-thats-me/

https://myalzheimersstory.com/2016/07/24/let-me-shine-a-dementia-rhyme-to-open-minds/

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Advocacy, Inspiration, Life & Living, Love

imagine how much suffering could be spared!

September 23, 2018 My Alzheimer's Story

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)

September 21, 2018September 21, 2018 My Alzheimer's Story

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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Inspiration, Joy, Life & Living, Love

the story of the cracked pot and the flowers she grew

September 24, 2017September 24, 2017 My Alzheimer's Story

The parable of the cracked pot, which I first came across more than a decade ago, is one of my favourites. It’s all about the flaws in perfection and the perfection in flaws, as well as a reflection on reframing our own imperfection. It recently occurred to me that revisiting the story might also be an interesting way to reframe the stigma associated with aging and dementia. I’ve re-written the parable (below) with that goal in mind.

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Once upon a time, there lived a servant who fetched water every morning for her mistress. She carried it in two large clay pots that she hung on either end of a pole, which she bore across the back of her neck and shoulders.

The pots were smooth and rounded, and perfectly suited to the task of holding the clear, clean water from the river. They were identical except for the fact that one was older than the other. After the long dusty walk up from the river, the water bearer emptied the clay pots into storage vessels at her mistress’s house.

One day, the water bearer saw that the older of the two pots had developed a crack through which a little water dripped. Over time, other small cracks appeared, and more and more water leaked out as the servant made her way up the hill from the river to the house. It wasn’t long before the cracked pot was only ever half full by the time the water bearer arrived at the kitchen door.

“Throw out that old cracked pot, and get a new one,” the cook scolded the water bearer. “Soon it won’t be able to hold any water at all! It’s broken and can’t be fixed, and it’s only half as good as the other.”

The pot that remained crack free seemed to swell with pride as the cook shouted. The water bearer said nothing. She emptied the old pot’s contents into a barrel, and then placed it gently back in its rope sling, ready for the next day’s journey to the river.

The poor old pot was ashamed of her deficits — miserable that she could accomplish only half of what she used to. That night, she lay next to her clay companion who hadn’t talked to her since the cook’s harsh words that morning, and she wept because she was so much less than she had been.

“I’m no good to anyone anymore, just like the cook said,” the old pot thought as she cried, and the pain caused her cracks to crack open a little wider.

The next day when they got down to the river, the old pot plucked up every ounce of courage she had and spoke as the water bearer dipped her into the fast-flowing current.

“I am ashamed of myself, and I want to apologize to you,” she said.

“Why?” replied the bearer. “What are you ashamed of?”

“I used to be perfect and appreciated, but now I’m old and cracked and worthless, just like the cook said,” the words rushed out as swiftly as the river ran. “Because of my flaws I’m a burden rather than a help. You do all of the work, and I’m no use at all.”

But the water bearer was full of compassion, and she loved the cracked pot, “Look at the beautiful flowers on the way back to the house. I think they will cheer you up,” she said.

Indeed, as the water bearer carried her up the hill, the old pot paid special attention to the flowers. She had been so preoccupied with her cracks and flaws that she had failed to notice their beauty before. She soaked in the warmth of the sun on her curves, and swayed gently as the water bearer trudged along the path. She even felt as if her cracks might be closing slightly.

But at the end of the trail, once again half of her water had leaked out, and she returned to despair.

“I’m so sorry,” she cried.

“Did you notice the flowers only grow on one side of the path?” the water bearer questioned. “I planted seeds on your side when I first noticed you had a crack. When you cracked a little more, I planted more seeds, and as I carry you up to the house you water them and the flowers they produce every morning.”

“In the afternoon, I pick the flowers for my mistress’s table. Without you being just the way you are, she wouldn’t have this beauty to grace her house, and I wouldn’t be able to enjoy it as I walk down to the river and back.”

With that, the old cracked pot never felt “less than” or worthless again. Instead, she felt loved and useful. She fulfilled her destiny, and relished the journey back and forth to the river every day. She took pleasure in watering the flowers, and watching them grow. Eventually, the cracks weakened her to the point that she broke into pieces, which the water bearer buried on the side of the path so the flowers might wrap their roots around the clay for stability and strength.

Read a version of the original parable here.

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

out of the mouths of babes come dementia truths

September 8, 2017September 8, 2017 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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Advocacy, Antipsychotic drugs, Poetry

confused, not clueless

July 13, 2017April 26, 2018 My Alzheimer's Story

Some people answer questions with questions. This is a poem in answer to a poem penned by dementia care advocate, author, blogger, and South Australia’s Australian of the year 2017 Kate Swaffer. Her poem “OK, where are my glasses?” inspired me and the words for this one tumbled out willy-nilly. I hope you enjoy it.

confused, not clueless

where have you gone
oh things I once knew
glasses, and jackets –
are you in the stew?

the phone looks just like
the TV remote
and my memory seems
to have gone up in smoke

who took my keys? and
the cat is now missing
“please let me find them,”
my mind keeps on wishing

i look in the bed
in the drawers, and the freezer
why do i suddenly
feel like an old geezer?

“stop repeating yourself,”
chide my son and his daughter
but the questions keep coming
like waves on the water

i still love to talk,
to walk, and to sing,
why do folks guess
i can’t do a thing?

a thing I can do
perhaps even two
so delete your believing
i don’t have a clue

i’m as smart as a whip
i always have been
if you show some respect
i won’t be so mean

don’t feed me chill pills
mashed up in my sup
treatment like that
makes me want to throw up

i crave more, i need better
stop thinking i’m dead
just because a few brain cells
have shrunk in my head!

© 2017 Susan Macaulay. I invite you to share my posts widely, but please do not reprint or reblog or copy and paste my poems and posts into other blogs or social media without my permission. Thank you.

https://myalzheimersstory.com/2017/06/20/the-demented-system/

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