Hope, Humour, Inspiration, Love

your name is a queen (elizabeth shares a lesson on labelling)

Let it go (it doesn’t matter if they know you or not) is one of MyAlzheimersstory.com’s most shared pieces. When I posted it on Facebook in January 2020, long-time follower Elizabeth Dunbar shared this delightful story:

My dad knew my essence until his last breath. Labeling and putting people in boxes and pigeon holes is a human convention. Other animals recognize each other without knowing relationships or each other’s history. They just accept.

So whether Dad knew my name or my relationship to him or not didn’t matter to me. I remember going away for a few days about a year before he died. When I returned, I bounced into his room as always. He looked quizzical. I realized he didn’t totally remember me, and I gave him permission to do that.

“I know you’re not feeling well enough these days to totally remember me,” I said. “Is it ok to give you a hint?”

He nodded his assent.

“Well I’m the daughter. One of two children you had. I’m the one that talks a lot!” I joked.

He threw his head back and laughed with tears in his eyes.

”Your name: it’s a Queen,” he said.

“Yes, that’s right,” I said. “I’m Elizabeth. Queen Elizabeth.”

We both laughed.

This was a simple conversation we had many times after that. Sometimes I think he was lucid and pulling one over on me, because that would be him. I always treated him like he was my dad, and let him know that any forgetting was simply okay.

I love this story. It’s so hopeful and helpful, and speaks to the power of playfulness and going with the flow. Thank you so much Queen Elizabeth Dunbar.

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

how often do we fail to recognize them?

 

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Care Partnering, Humour

care partner humour: milkin’ it!

Care partner Catherine Bixenman-salesi knows how to laugh (as well as cry) in the face of the day-to-day ups and downs of living with her mom who lives with dementia. Here’s a short chuckle Catherine posted in a dementia care Facebook group:

Sometimes I don’t know whether to laugh or cry LOL! This happened just now:

Mom: Excuse me, I want milk.

Me: You hate milk, Mom.

Mom: You are lying to me.

Me: Okay, I will bring you some milk.

I go to the kitchen only to find that my kid has left a gallon milk container in the fridge with about a half teaspoon of milk in the bottom of the container. Why? I ask myself. Why does he do this? Arrgghhh. I pour what my kid has graciously left us into a glass, and bring it to my mother. She takes a sip and rolls her eyes. “This tastes like milk,” she says. “I hate milk.”

It’s gonna be one of those days!

Thanks for all you do Catherine, including sharing tips and stories like these:

https://myalzheimersstory.com/2018/06/21/hot-pink-duct-tape-solves-alzheimer-seating-issue/

https://myalzheimersstory.com/2018/03/15/turn-potential-dementia-disasters-into-fun-and-laughter/

https://myalzheimersstory.com/2019/04/17/need-more-sleep-heres-a-care-partner-tip-that-might-help/

https://myalzheimersstory.com/2019/02/26/dementia-care-partner-mom-investigated-for-having-daughter-help-with-care/

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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

~~~~~~~~~~

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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Activities, Advocacy, Hope, Humour, Life & Living, Videos

how old is old?

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Humour, Tips, tools & skills

get silly billy!

“One of the things we teach our caregivers is to take time to be silly or even just to sit quietly. Sometimes we like to make silly faces with our residents or even take selfies. Being silly can be a great redirection tool to get a resident or family member out of a negative mood or a sad day. Try it and let us know if it works for you. And smile. Always.”

You go Joanna!
~~~~~~~~~~~~~~~~~

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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Care Partnering, Challenges & Solutions, Humour, Tips, tools & skills

turn potential dementia disasters into fun and laughter

Many dementia care partners have learned that going with the flow works magic: it can turn potential disasters into gales of laughter with very little effort. All it takes is a little bit of imagination. I stumbled on a perfect real life example shared by care partner Catherine Bixenman-salesi. in the online dementia support group USAgainst Alzheimer’s.

Catherine shared the vignette in response to an article on validation that had been posted by group administrator and dementia care author and advisor Carol Bradley Bursack.

Here’s what Catherine had to say:

“My teenaged son often corrects his grandmother, and then suffers the consequences. I, on the other hand, let her stories flow. I also enjoy adding flavour to them. This makes her perk up, and turns her from sad to glad. It also gets her talking, and gesturing with her hands. I help piece the sentences together by filling in every other word, and away we go. Last night, she noticed a commode in her bedroom. She pointed at it and in an angry tone said: ‘Not mine!’ It was a perfect opportunity for some fun.

‘Tell that lazy ass woman to take her belongings with her when she goes,’ I said with a scowl on my face. ‘I have enough work to do here without having to clean up after her!’

Mom burst out laughing. What a joyful sound it was. Of course I laughed too. It seems like a silly thing, but to her it was funny. I could have told her it was hers, which it is, and she would have denied it and become hostile. Instead, I went along with her version of reality. The result? Smiles and laughs all around.”

Kudos to Catherine! I know from my own experience that this, and other imrov techniques really works a treat. I talk about in the video clip here, and in my BANGS model here. If you haven’t tried “going with the flow,” I highly recommend you do so. Your stress level will drop and your relationship with your care partner will improve.

If you have tried going with the flow and have similar stories to share, I’d love to hear them.

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Advocacy, Antipsychotic drugs, Humour

7 snippets from a story about unborn baby bunnies that is scarily similar to the myth of bpsd

For about 80 years, it was accepted as scientific fact that rabbits were first domesticated in 600 A.D. as a result of a decree issued by Pope Gregory the Great declaring that fetal rabbits could be eaten during Lent.

Similarly, for about 30 years, after the International Psychogeriatric Association “invented” the artificial construct of BPSD in the late 1990s, it has been accepted scientific fact that when people who live with dementia respond normally to particular sets of circumstances, and that those reasonable reactions upset or challenge those around them, that those reasonable reactions are caused by dementia. Like the myth of the unborn baby bunnies, the myth of BPSD is being debunked.

But I’m getting ahead of myself.

Quite by accident, in 2016/17, the rabbit domestication story that had been accepted by scientists around the world for almost a century was discovered to be a complete fabrication.

“The whole thing is a house of cards,” Dr. Greger Larson said [as reported by the New York Times], acknowledging that he too has cited the story just like many other researchers. The remaining question, he said, is: “Why did we never question this? Why were we so willing to believe in this origin myth?”

Dr. Larson, who is the director of the paleo-genomics and bio-archaeology research network at the University of Oxford, made the finding (actually, more accurately, it was discovered by one of Larson’s graduate students whom Larson had asked to do some historical fact checking), which was subsequently published by Trends in Ecology and Evolution in December 2017, and which you won’t be able to read unless you live in an ivory tower (one of my pet peeves).

What astonished me as I listened to the story (hear it for yourself below), were the similarities between it and the ongoing acceptance as truth by much of the research, medical and gerontology community worldwide of the artificial construct of so-called “behavioural and psychological symptoms of dementia,“ more commonly known as “BPSD.”

In particular, the uncanny applicability of these snippets of conversation between CBC host Carol Off (CO) and guest Greger Larsen (GL) struck me:

  1. GL: “The story…has been banging around for years but nobody ever bothered questioning [it]. And it’s in both the lay and academic literature…”
  2. CO: “How much of that actually turns out to be true?” GL:“None of it actually.”
  3. GL: “…and so the whole thing is just a house of cards of kind of accidentally mistaking people and translations and older references that all then got pieced together slowly. A bit like a Chinese Whispers or a game of telephone when you were a kid, and so the end result ends up being this kind of bizarre story…”
  4. GL: “And everybody just cites this story very easily over and over again, until it becomes recognized as a kind of fact.”
  5. GL: “So all of these little bits of it were just being kind of shelved onto a house that was being badly constructed with a lot of different materials, until you ended up with something that just made no sense whatsoever.”
  6. GL: “…what the rabbit story really revealed to me was the degree to which we don’t question the things that fit into our worldview. So if I tell you something that you believe without me having to prove it, then you don’t require a whole lot of evidence.”
  7. GL: “…actually there is not a single case where we have any decent evidence…”

The interview closes with this summary into which I’ve inserted in italics what I see as additional parallels to the myth of BPSD:

“These things are agglomerated onto an evolving tradition (the biomedical model). And now when we get to it, we just think ‘oh, well rabbits have always been associated with Easter (“challenging behaviours” are caused by ADRD). And actually they are a very, very recent addition (human behaviour has always been human behaviour until we had a reason to label it as aberrant). And somehow the hare (reasonable reactions to adverse circumstances) got replaced (with BPSD), even though the hare was part of it all along. So when and where that took place and what the motivations were (Ignorance, misunderstanding, good intentions and Big Pharma profit marketing?) and how it all happened (Ignorance, misunderstanding, good intentions and Big Pharma marketing?) we’ve got no idea, but that’s a project we’ve got going on (indeed we do). And what we’re going to get to the bottom of that one (damn right!).”

Here is the CBC As It Happens interview with Dr. Larson (fascinating AND funny):

Listen to the complete As It Happens show in which the segment was aired here

In the event that you don’t see the sanity in what I say and/or you don’t share my view, I offer this:

Thanks to CBC and As It Happens for great stories and public broadcasting worth listening to.

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Hope, Humour, Life & Living, Love, Videos

one little kitty’s top dementia care tip

Pia Roma waking up from her morning nap, September 2017

Mom adored her little cat Pia Roma, who was named for a trip Mom and I took to Rome in the early 2000s.  When Mom was placed in ElderJail, I gave Pia to the friend of a friend to care for. She hid under the sofa for six weeks, only coming out at night to eat, drink and use the litter box.

The friend whose friend I’d given her to retrieved her and took Pia to her flat where Pia hid under the bed instead of the sofa. Meanwhile, when I saw what ElderJail care was like, I couldn’t leave Mom, so I rented a house nearby. About a month later, I rescued Pia and brought her to live with me. This time she hid under a big armoire in the living room, thankfully it was only for a few days. That was five years ago, and we’ve grown pretty close since then

Pia’s “getting up there” in cat years, and is starting to have health issues. In fact, she was so ill in the spring that I thought I was going to lose her. But being a fighter seems to run in the family, and lo and behold she bounced back. Like Mom in her waning years, Pia hasn’t lost her playfulness, quirkiness and attitude.

I’ve learned that Moms and cats have a lot to teach us about living right, and fighting the good fight.

 

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Humour, Life & Living

for the want of a key: #alz LOL

Care partners often trade amusing stories of the zany adventures they have with their care partners who live with dementia. Not to laugh at them, but to laugh at the funny side of living what is often a kind of crazy roller coaster existence. If you didn’t laugh, you’d cry.

Here’s a story of my own, followed by that of online friend on the same theme.

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I was at a point in my caregiving journey where I really needed more respite. I had been living with Mom in her house, out in the country, eight miles from the nearest town, for about eight months. I had great support during the week, but it was difficult to find “companions” to come and be with her for a couple of hours on weekends. I finally found someone who said she had loads of experience dealing with people who live with dementia. “You’re in!” I said.

On the first Saturday of her employment, the new caregiver charged in like a bull in a china shop. Mom’s eyes were as wide as saucers. I knew in nanoseconds that it wouldn’t work out, but I was desperate to have some “alone time,” so I escaped for three hours, leaving them to their own devices.

“All good,” the caregiver said upon my return. “It went super well.” I was sceptical. Nevertheless, I asked her to come back three weeks later.

When she arrived at the appointed time three Saturdays later, I again felt uncomfortable with her overall demeanour, but again, I needed to get away. So I left Mom and her sitting on the back deck having tea, and scooted off to the library “in town.” About 45 minutes later, my cell phone rang – the new caregiver.

“I’m in the backyard,” she said.

“That’s nice,” I replied.

“Not really,” she said. “Your mother locked me out of the house.”

Ah. Mom. Always clear on whom she liked and whom she didn’t – dementia or not!

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

C.B. responded with this:

Mom locks me out too. One time it was winter, we’d just had about a foot of snow. I went out to take the dog for a quick walk – didn’t bother to put my coat or boots on, walked out in my shirt and slippers.

As I’m headed back to house, I notice the lights are all off. Mom had locked the door. It was midnight. I  banged on the door and gently called her “Open up, Mom. It’s me. Mom?” Not a peep from inside.

I hadn’t shovelled the way to the side gait, so I couldn’t open it. I had to use my bare hands to clear the snow away. Once I finally got in through the back door, I found Mom eating ice cream at the kitchen table. 

“Mom,” I said, “you locked me out. Didn’t you not hear me knocking, and calling?”

“Oh, was that you?” she said.

Now when I walk the dog, I always make sure to take my keys and my cell phone.

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Do YOU have a funny story to share? Feel free to do so in the comments 🙂

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Humour, Life & Living

everyone i know and love is “doomed,” including me

Enough is enough already.

Here’s the thing: you may or may not be able to avoid getting Alzheimer disease or some other form of dementia by living as well and as healthy as you can. Yes, do all the good stuff: eat right, exercise, love, laugh, engage life, worry a little (but not too much), take risks (but not too many), tell jokes, surround yourself with people and objects and environments that bring you pleasure, cry, embrace the universe and everything that’s out there.

If you do all that, maybe you won’t get some form of dementia, or cancer, or ALS, or heart disease or whatever. Maybe you’ll die in a car crash. Or an avalanche. Or by snake bite. You can check the probable causes here.

But one thing is sure, something is gonna get you and me and everyone else in the end. The way things are going, maybe we’ll blow the whole planet and every living on it to smithereens. Who knows?

So. Every now and again go bwahahahahahahaha, and forget what the researchers say.

 

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