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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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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Inspiration, Life & Living, Love, Poetry

all fixed up: a lighthearted ode to our broken bits

The problem with overvaluing perfection is it sometimes leads us to want to fix things that don’t need repair, or to think that people and things are broken when in fact they’re not.  I believe people who live with dementia remain whole in their souls. So do the rest of use even as we change and evolve. This poem is about that. Just for fun.

all fixed up

Dedicated to the broken bits that needn’t be repaired.

all fixed up

©2017 punkie  

our stories lie in fragments
like our fractured selves
could they be assembled
by santa’s little elves?

or maybe fairies in the spring
will put us back together
like a cobbler works boot magic
with italian leather

perchance a layer of red bricks
would stack up all the blocks
slather mortar in between
while antique clocks tick tock

a seamstress would repair the tears
with thread and crossing stitches
lay them smooth upon a board
then iron out the glitches

a surgeon she could operate
cut, excise and sew
transplant better body parts
and hey, we’re good to go!

perhaps a quilter with a needle
should join up all the patches
in a crazy random pattern
where nothing ever matches

a coach might tell us how to do
say rah rah what’s your plan?
don’t worry if you trip and fall
god knows you’re greater than

yo we could go for therapy
pay it by the hour
turn bittersweet the notes we thought
only tasted sour

mechanics they could change our oil
while we lie high on lifts
tinker with our underbelly
tune us up in shifts

docs and nurses dole out pills
we could take our pick
problem is, the medicine
makes us feel more sick

teams of techies we might hire
divide them into crews
nothing but the cream of the crop
a fixer-up who’s who

or maybe we’ll just stay broken
it’s really not that wrong
to be a little cracked and bent
what matters is our song

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

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Life & Living, Love, Videos

it’s true what they say about rainbows

October 30, 2017: This morning I opened the curtains in my bedroom to find the hint of a rainbow in the sky on the other side of the lake. It was barely discernible.

For the next couple of hours the promise of the rainbow drew me to the west-facing windows in the house as it faded and reappeared in bits and pieces on the horizon. Finally, in the middle of my tea, toast and honey, it stretched seemingly solid, absolutely brilliant, and truly magnificent across the high morning mist from the rolling southwest hills to the river valley below my neighbours’ house. It seemed close enough, and solid enough, to touch.

I took a picture of the end where I thought the pot of gold might be — on the riverside path where I walk and cycle. By the time I thought to capture the full span of the  stunning arc on video, it had all but melted into the morning cloud. I was reminded of how everything can be gone in the matter of a few moments:

This afternoon I remembered it is was six years ago today that I walked back into Mom’s big brick house on the hill (to the delight of some, and the dismay of others), having gone back to Dubai only a month and a half earlier after my usual summer visit with no intention of returning to Canada until my regular Christmas holiday.

I also remembered that Mom and I had spotted a rainbow across the road in the summer of 2011, and I revisited that memory out of curiosity:

Mom and I sang Somewhere Over the Rainbow so many time together in the ensuing years that I couldn’t help but wonder if the rainbow this morning had anything to do with the anniversary of my return.

I was left thinking that perhaps what they say about rainbows is true.

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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.

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

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.

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

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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Death & Dying, Life & Living, Love

happy last birthday dear mummy

September 27, 2017: I never called my mother “mummy.” It’s what my mother called her mother, my grandmother. Maybe that’s why Mom sang “happy birthday Mummy,” when she chimed in two years ago on September 27, 2015, as you will hear below if you care to listen.

The year Mom turned 80 (2008), I sang happy birthday to her every day for two months because I wouldn’t be there on the day itself. Counting those 60 times, I probably sang her happy birthday five score and ten times at least. Every time off key and out of tune I’ll wager (I inherited Mom’s feisty spirit, but not her beautiful singing voice).

As a teenager, I called Mom “Ma,” which she hated. In my twenties I switched to Mom, and later, as the Alzheimer’s evolved, I sometimes called her Patty, which she spelled with a “y,” and which I spelled with an “i,” and preceded by “Pinkie,” as in Pinkie Patti.

Mom frequently responded more readily to Patty, the short form of her given name Mary Patricia, when “Mom,” didn’t seem to work. Maybe because she was Patty for 28 years longer than she was a mother.

Mom’s beloved brother, and her late sister Lee called Mom “Poose” (it rhymes with moose) or “Poosie.” Her late sister Jean called her Patsy, and my grandmother mostly called her Pat. When they were still married, my dad called her “Wid,” or “Widdy.” It’s was a strange term of endearment that I don’t know the origin of, and now never will as the only two who would know are gone. Mom called me Punkie, or Punk for short–a nickname for my nickname as it were.

It’s funny how we acquire different names and labels during our lifetimes. Some we assign ourselves, others are bestowed or cast upon us by family, friends or enemies. Some characterizations may be accurate, many often are not. One thing is certain, people who live with dementia, or who lived with it as Mom did, suffer more than their fair share of inappropriate and unwarranted labels, the vast majority of which are pejorative and harmful.

When I went to visit Mom on September 27, 2015, her last birthday in this place, I roused her from a light sleep with a gentle “Patty,” and reminded her it was her birthday. I sang her happy birthday for what I didn’t know would be the last time. I wrote about it here, and you can listen to my singing (if you dare!), as well as hers, by clicking on the audio bar:

I invite you to read about the rest of our magical last birthday afternoon together here and here.

Mary Patricia (Patty) Macaulay: Obituary

dead mom talking full of grief, wisdom and tenderness

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