Humour, Life & Living, Love, Memories

flute flies & love taps

September 11, 2017: Mom had a great sense of humour.  She spent more time laughing than she did crying, although of course like all of us she did both. After she went  into what I would come to call “elderjail,” I often brought her to my place for lunch, or dinner, or healing music sessions with Eric.

On this particular day, September 11, 2014, we made a mid-day meal together. I must’ve had some bananas, or maybe some tomatoes from the market sitting on the counter because there were fruit flies in the kitchen.  Mom and I got to  laughing about the “flute flies,” where they might’ve come from,  and what we might do with them. On the spur of the moment I pulled out my iPhone, as I often did, and recorded a “selfie video.”

While September 11 is remembered as a tragic day by many, and rightly so, I recall it with a smile because of the flute flies and the love taps Mom planted on my wrist thus causing my hand to shake, iPhone and all…

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Love, Memories, Poetry

still flying those night flights

This is a poem to remember August evenings, summer, travel, dreams, hope, death, grief, rebirth, longing, flight, sunsets, and my mother’s imagination and spirit which live on in me and which I hope will infect/inspire anyone who reads this and the words that follow.

 

still flying those night flights

copyright @2017 by punkie

three days before

the first anniversary

of my mother’s death,

i still fly the

night flights

to london

at sunset,

they leave

disappearing streaks

across darkening skies

like shooting stars

i watch later

after dusk

is just

a memory

and still i cry

every time

probably

always

will

 

The earlier poem is here.

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

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Joy, Life & Living, Love, Memories, Videos

an alzheimer easter egg hunt

I had intended to leave home over the Easter weekend 2012. It was to be my second two-day respite after returning to live and care for Mom five and half months earlier.

I was physically and emotionally exhausted; I desperately needed to get away. I was counting on the person who was soon to be in complete legal control of Mom’s care, and who lived just a few miles down the road, to be close by in case Caroline, our angel care partner, needed support while I recharged my batteries.

But as many care partners learn to their dismay, relying on others often leads to disappointment, anger, resentment, and the feeling you’re drowning. I was both furious and at a loss when I discovered the back-up I had hoped for would not materialize because the person in question was going to Mexico on vacation. If I didn’t get a break, I would suffer a break – I knew that for sure. I decided to cancel my away time, but also have Caroline come for a “tag-team” weekend. It was the best solution I could come up with under the circumstances.

As many things do, it turned out to be a blessing in disguise.

Over the weekend, Caroline, Mom and I shared some lovely moments including an Easter egg hunt during which we hid, found and ate chocolate eggs (not necessarily in that order!). I filmed and photographed some of the fun, which reminded me of my childhood. I am truly thankful to have these memories, though I still sometimes struggle with anger toward family members who failed Mom and me, and worse, actively vilified me and, incredibly, did their best to make my life miserable. I’ve heard the same kinds of sad stories from other carers worldwide — a situation that makes being a care partner even more difficult than it already is.

But I don’t want to dwell on that “bad karma.” There’s no use being bitter and twisted because of someone else’s unconscionable behaviour. All it does is give them more power, which is of course what they seek. Instead, I want to celebrate having brought my mother joy and myself healing while we lived with her dementia. The road was extraordinarily difficult for both of us, but it was worth it in the end, and I have no regrets.

I hope you like this three-minute video of our 2012 Easter egg hunt. If you are a care partner to someone who lives with dementia, I also hope you are inspired to create moments like these filled with life, living and the people you love.

https://myalzheimersstory.com/2015/05/29/101-activities-you-can-enjoy-with-a-person-living-with-alzheimers-dementia/

https://myalzheimersstory.com/2015/04/03/happy-easter-memories/

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Care Partnering, Hope, Humour, Joy, Love, Memories

happy big bird day!

May 3, 2012: Caroline and Mom after they had just hung out the laundry. The colourful napkins they’ve carefully pinned on the line make me think of Buddhist prayer flags.

I didn’t know I was shaking hands with an angel when I met Caroline (aka Big Bird; pictured above with Mom), on October 31, 2011, my late grandmother’s birthday, and the day after I arrived back at Mom’s place to live with and care for her full time.

Caroline knocked at the door at 13:00 precisely. I soon learned it was her habit to be punctual. Never early, never late. Always on the stroke of the appointed hour. Initially, she came to us on Monday and Wednesday afternoons; someone else came on Tuesdays and Thursdays, and yet a third person on Fridays; all of them from 13:00 to 18:00.  The rest was up to me.

Big Bird and I connected from the first minute of the first day, just as she had bonded with Mom immediately when she had begun working with her six weeks before my return. They made a somewhat comical pair: tall, lithe, 33-year-old Caroline, and short, stocky 83-year-old Mom. Their 50-year age difference made no difference at all. They loved each other from the get-go.

When an angel walks into your life, you do everything you can to keep her there. Over the next several months Caroline and I fought to have her spend more time with Mom and me. Thank God we won that battle! By the end of January, 2012, Caroline was with us from 09:00 to 18:00 five days a week. We were so blessed. Caroline accompanied Mom through breakfasts, shower times, walks, trips to the grocery store, visits to the bathroom, clothes shopping, flower arranging, snow shoveling, birdwatching, leaf raking, gardening, watering, fire lighting, lunches, laundry hanging and whatever else was on the agenda with grace, compassion and the utmost care. The did everything together, and laughed and giggled their way through life’s ups and downs like a couple of schoolgirls, despite the hardships and challenges of living with Alzheimer’s disease. Of course there were difficult times–many–and we all cried separately and together on many occasions as well. I was/am profoundly grateful for all of it.

The three of us formed an amazing care partner team. We tackled chills and spills; we celebrated small victories. None of us could have done it without the other two. Our triad was and still is a testament to feminine strength and wisdom. January 12 is Big Bird’s birthday. Here’s to her with a rogues’ gallery featuring Mom and her during various adventures — I know it will bring a smile to her face and perhaps a tear to her eye.

I love you Big Bird! My brain may one day forget all you did for Mom and me, but my heart will always remember. Happy Big Bird Day XOX Punkie

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Care Partnering, Life & Living, Love, Memories

the day our best wasn’t good enough

November 16, 2012: I took the photograph before nine; I know for sure because Caroline was never late. In it, Mom stands like a ghost in the back doorway, peering from the inside out. She’s already knocked several times on the window – an impatient signal for me to join her.

121216-mom-in-door-upright-croppedThe hood of her white winter coat is pulled up over the silly tuque (also white) that causes me to giggle every time she puts it on because it makes her look like an alien. She picked it out herself on a shopping expedition with Caroline and she thinks it’s lovely. Her fuchsia-gloved hands are at her sides next to her pocket sockets.

I’m out and she’s in because she awoke, got up and came downstairs during my crack-of-dawn photo shoot. Maybe she felt something was wrong. I saw her through the window and went back into the house, bundled her up and dragged her outside with me so I could  continue capturing the morning glory. She quickly tired of the adventure and wanted to go in. Who could blame her? Outside is was a bone-chilling mid-November day, the 16th to be exact; inside her big brick house it was warm and cosy. Why in the world would she want to be anywhere else? I snapped a dozen more images including several of her phantom-like behind the gingerbread screen door and the glass. Then I pocketed my iPhone and shivered, but not from the cold.

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

Caroline walked through the front door at 9 a.m. sharp as usual. She had tears in her eyes.

“I don’t know if I can do this Punkie,” she said.

“I know Big Bird.” I reached up. She bent over. We hugged. Caroline is close to six feet tall; Mom looked like a peanut beside her. But the unlikely pair had grown as close as any two people could possibly be. Had I not loved Caroline too, I might have been jealous. In fact, it was a privilege to witness to the joy they found in each other whenever they were together. During the previous year, Mom had crawled into bed with me most mornings with the same questions:

“Is Caroline coming today Punkie?”

“Yes Mom, she’ll be here at 9 o’clock.” I answered if it were a weekday.

“Oh. That’s good eh Punk?”

“Yeah. We love Caroline Mom. She’s an angel.”

“Yeah. She’s a good girl that Caroline. How long before 9 o’clock Punk?”

“Let me see Mom. It’s six now, so she’ll be here in three hours. That’s not too long. Why don’t you try to go back to sleep until then?”

“Okay. I’ll try.” And sometimes she did. But on November 16, 2012, Caroline found us downstairs in the kitchen instead of snuggled up in bed.

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

Both Caroline and I had been pretty messed-up for several weeks. Lots of tears. Lots of hugs. Lots of wishing things were different. Sadly, they weren’t. We were exhausted, drained, at the end of our proverbial ropes. Together, we had cared for Mom for a year with only occasional support from a couple of other outside caregivers. We were emotionally and physically spent.

Had I known then what I know now, I believe I could have reduced the strain on all of us. But I didn’t. I learned a great deal during that year, but I’ve discovered a lot more since. To properly care for someone with Alzheimer’s disease in their own home without someone having a breakdown of some kind requires a team of five or six care partners working in shifts. We were two, and I was powerless to change things.

But we loved her, we loved each other and we did the best we could. We forged a magical three-way bond right from the start: a triad of women of different ages with differing challenges pulled together unexpectedly by the disease of the eldest. Our year-long journey was a hugely enriching gift in many ways. This was the day it would come to an end. Caroline and I despaired at the thought of Mom leaving her home of forty years, where she was surrounded by the things she cherished, to live in an unfamiliar place filled with strangers. On top of everything, we were devastated by what we were about to do. She didn’t know. We hadn’t told her. To her this day was a day like any other.

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

We had breakfast together as we often did, then Caroline took Mom upstairs to help her shower and get dressed. When they came back down, Mom looked beautiful. Her short-ish silver white hair was slightly wavy. Caroline and she had chosen a purple turtleneck and matching corduroy trousers. Her favourite ski medal sat dead center under her chin. The silver filigree slipper and chain I got her at the suq in Marrakesh hung just above her Christmas tree lights necklace. She had on her flower petal rings and her watch.

She and Caroline played catch in the kitchen with a squeegee rubber toy, and her pink bangles tinkled as she moved. They sang “You Are My Sunshine.” I shot some video. Caroline carefully did Mom’s nails at the kitchen table just as she had done virtually every weekday for a year. It would be the last time. In the midst of the manicure, Caroline reached for a tissue and blew her nose. Mom blew her nose too. Caroline seemed to have something in her eye. Mom didn’t notice, but I did.

I made them pose in the middle of the kitchen and froze them in time: two fast friends more than fifty years apart in age laughing, clowning and singing like a couple of schoolgirls. Aside from the misty eyes I saw and Mom didn’t, Caroline didn’t give away a thing. They were simply gorgeous in those last moments on that last day.

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

“I’m taking you for lunch and then we’re going to go shopping Madam. Okay with you?” Caroline said to Mom at around noon.

“That’ll be a nice treat,” Mom’s face lit up; she turned to me, “Are you coming too Punkie?”

“Not today Mom. I have a few things to do. I’ll see you later, okay?” I had a hard time forcing the words out while holding the tears at bay.

“Okay dear,” Mom felt safe going with Caroline. “We won’t be long.” She trusted us. We were her family, one daughter born of the flesh, the other of the spirit. She didn’t know that once she walked out the door she would never return to this home again. But we knew.

I watched them make their way out to the car, Mom in her rust-red coat this time, not the white one. She had on her beloved pink tam. Neither of them looked back. But for some reason, I waved. When they were finally out of the driveway and onto the road, I turned and felt the big wooden door support me from behind as I slid to the floor. I sat there alone for a long time just letting tears roll in rivers down my face.

We did our best. But in the end it wasn’t enough. Anyone who has been through this will know what I mean. Every November 16, I cry again. For all of us and for everything we could and couldn’t do.

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November 16, 2017:

https://myalzheimersstory.com/2017/11/15/when-youre-put-behind-bars/

November 16, 2015:

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

November 16, 2012:

https://myalzheimersstory.com/2012/11/16/moving-day/

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Care Partnering, Life & Living, Memories

yesterday if not sooner would have been better

now-not-tomorrow-crop

Flashback November 8, 2011: “I don’t really want to have all those bags in there,” Mom says for the hundredth time as she walks into the den where I sit on the sofa with my laptop.

“I know.” I answer. My mostly unpacked suitcases are still on the living room floor across the hall in various states of disarray. Socks and shirts and skirts and shawls attempt to escape with mixed success. It’s been a little over a week, and it’s a bit of a mess I must admit.

“We’ll have to take them upstairs. The two of us. I don’t think I can carry them myself,” Mom astutely observes.

“I can’t carry them either,” I agree.

“We’ll have to get Lorne to do it then!” She says, clearly frustrated. Lorne is a local house painter, contractor, jack-of-all-trades and second son to Mom; he’s her go-to guy if my brother is not available to do this-that-or-the-other-thing. “Poor Lorne,” Mom says. Poor Lorne indeed.

“I’ll unpack them and gradually bring the stuff upstairs. I’ll do it as fast as I can.” I have a plan, but its execution is too slow for Mom who likes things done in Mom time, which is pretty much as soon as she notices it needs to be done regardless of what you might be doing when her priority pops onto the radar screen. Mom’s tasks trump all others. It’s been like that for, well, as long as I can remember.

“What will we do with the suitcases?” she asks.

“I don’t know. We’ll put them in the…I don’t know. We’ll find a place for them.” I continue to tap tap tap on my laptop and only partly pay attention. It’s tough to actively participate in the same conversation you’ve had five, ten, fifteen and twenty minutes ago and at least thirty-nine times yesterday. Meanwhile, Mom bounces back and forth between the den and living room.

“’Cause you don’t want to ruin the suitcases by putting them somewhere where it’s too damp or something. We’re going to have to put them somewhere where it’s…where they’re going to stay good.”

“Yes,” I agree. She leaves my side and crosses the hall again.

“And there are only so many places in the house. So we’re going to have to think about where we’re going to put them. They maybe could go in a cupboard somewhere. Because you see there’s one, two, three, four, five, six, bags,” she counts. I tap, tap, tap, fingers flying.

“I know.”

“And they’re all full!”

“I know.”

“No. There are seven! One, two, three, four, five, six, seven. There are seven. Because there is one big box here…” her voice trails off.

“Yes,” I sigh. She doesn’t hear because she’s in the other room and even if she were right beside me she wouldn’t hear anyway despite the fact that her hearing is perfect. It’s the bit that goes from the ear to the brain that’s not one hundred per cent. Or maybe information gets lost in the brain itself. Somebody somewhere may have the physiological answer but it doesn’t matter because they’re not here in this house with my mother right now and I am and what would I do with the information anyway even if I had it?

“I don’t know what’s in there. Because something, something, something’s gone wrong, I don’t know what’s happened to it. I don’t know what’s in it, because there are two big holes in the back.”

“Yup.” She’s talking about the box the spinning contraption for my bike is in; the box has holes in it and part of the equipment, which weighs a ton, is sticking out. It’s an odd looking thing that has her bamboozled.

“It’s torn you see. It’s gone squeegee.” Squeegee is one of Mom’s favourite words. It means broken, screwed up, messed up, not right, not as it should be. She and I and the box are all a bit squeegee. And we’re going to get squeegier and squeegier in the seconds, minutes, hours, days, weeks and months that follow. Oh my yes. I can see it coming. Like a whole host of tornadoes skipping across Kansas in storm season. Hold on to your hat Toto!

“I don’t know what’s in there. So tomorrow we’re going to have to sort out these things because I can’t have all that stuff sitting in the living room.”

“I know.”

“Because people come in and where am I going to put them? So we’re going to have to take those boxes up, or open them up, and put them wherever you want them upstairs. We’ll have to clear out some of the cupboards upstairs.”

“I know. That’s what I’ve been trying to do Mom the last couple of days, Mom. Clear out the cupboards so there’s room for my stuff, but I haven’t been able to do it as quickly as I would’ve liked.”

“Well then I can help you, because I  don’t want them all sitting in my living room. So we’ll have to take them upstairs, and maybe you can unpack some of them, I don’t know. And I don’t know if I have enough cupboard space to put them all in like that. I’m not sure, we’ll have to look at the cupboards first.”

“Okay.”

“We’ll have to see what we’ve got up there.” She goes back into the living room. “Because you see you’ve got one, two, three, four, five, six, seven–you’ve got at least seven things and one of them is this huge…there are two huge…huge… Well there’s one really big one. I couldn’t possibly–”

“I can’t lift them either.”

“Eh?” She comes back into the den.

“I can’t lift any of them either,” I repeat.

“Well that’s why were going to have to get Lorne. You’re going to have to phone him.”

“I’m going to unpack them down here Mom, and take the stuff up in stages.”

“Oh.”

“I’m not going to carry the suitcases up.”

“Okay, but where are we going to put the suitcases?”

“I don’t know Mom, we’ll have to figure that out when they’re empty.”

“‘Cause you don’t want to ruin the suitcases.”

“I know, but I’m not thinking about that right now. The first task is to empty them.”

“And then you’re going to have to have them in a place where you’re sure they’re going to stay firm and good,” she says as if they are so many pieces of fruit instead of suitcases.

“I agree.”

“Because they’re expensive bags!”

“I know.”

“You’ve got to have them in a place where there’s not too much…umm….hmm…ummm…What do you call it when it’s in a house? It’s ummm. Well, I mean I can think about what the word is. But it’s…it’s…You don’t want to ruin all your suitcases.” Mold, Mom, the word you want is mold.

“I agree,” I say.

“Just because you have to take all your clothes out of them.”

“I know.”

“We’ve got to find a good place to put the suitcases.”

“Yes.”

She’s back in the living room now. “Because you’ve got one, two, three, four, five, six suitcases and none of them is small. Well there’s one pink one that’s kind of small, and a black one and there’s the cat sleeping beside one of them.” She comes back into the den.“You’re going to have to make arrangements for all this stuff, depending on how long you’re going to stay,” she says.

“I’m staying forever,” I reply.

“Oh,” she says. That stops her dead. For about three minutes. And then we begin again.

“When are you going to get these boxes and bags out of here?”

It takes me another week. Yesterday if not sooner would have been better.

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Image copyright: paktaotik2 / 123RF Stock Photo

Care Partnering, Life & Living, Memories

yes mom, yes mom, three bags full

three-bags-full-crop

baa baa black sheep,
have you any wool?
yes sir, yes sir, three bags full.

one for the master,
one for the dame,
one for the little boy who lives down the lane.

baa baa black sheep
have you any wool?
yes sir, yes sir, three bags full.

English nursery rhyme

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

October 26 – November 5, 2011: One, two, three bags and a carry on accompany me from Dubai to Montreal via Frankfurt. I purchased the three-case set when my ex and I split up in 2005; it made it easier to manage my luggage alone on trips back and forth to Canada. The HUGE-, medium- and small-sized cases in the set attach together to form a “train” I can tilt and tow despite their substantial collective weight when they’re all full, which they most certainly are on this final trip “home.”

I treat myself to a two-night layover at the Kempinski Gravenbruch, my favourite place to pit-stop in Europe to reduce the effects of jet lag. I’ve stayed at the Kempinski many times as I to-ed and fro-ed between the United Arab Emirates and Canada over a period of eighteen years. This is likely be my last visit. Four super-stuffed and much heavier bags and my specially boxed road bike are following by FedEx, which surprisingly prove to be the fastest, cheapest and most efficient way to get them from the Middle East to Mom’s.

Lynn, my long-suffering part-time personal assistant, is mopping up the rest of my Dubai life. Before I left I got rid of seemingly endless boxes full of books and papers as well as the unwanted and/or unneeded detritus I had accumulated in my two-bedroom flat during the previous eighteen months. We labeled things I couldn’t bear not to have back with me someday with orange sticky dots, and decided which pieces of furniture would be stored and later shipped to wherever I might choose to settle in some distant future. Whatever wasn’t thrown out, given away or orange-dotted Lynn will sell. Besides stuff, I shed several buckets of tears. Lynn sniffled occasionally; she’s more stoic than I.

The trip itself is uneventful: a six-and-half-hour overnight flight from Dubai to Frankfurt, two nights at the Kempinski, an eight-hour day flight onward to Montreal, and a two-hour drive from the airport to Mom’s place in Quebec’s rural Eastern Townships. I move relatively easily from one side of the world to another as I have done so many times before. But this time I’ve also ripped myself out of a life I loved, scrunched myself into a ball as a writer might an unwanted page in a difficult manuscript and tossed myself into the wastepaper basket of a destiny I hadn’t bargained for.

Some things in my new life are utterly familiar. As usual, Mom wants me to unpack, “get organized” and toe the line before I even have the chance to take off my proverbial coat. The FedEx-ed bags arrive the day after I do, and five days later all my luggage except for my carry on, which I had quickly emptied, and my bike, which is being reassembled at a local sports store, remain mostly intact in the living room because the suitcases are too bulky and heavy to maneuver up Mom’s steep stairs.

I have begun to unpack in fits and starts and carry bits and pieces up to my bedroom, but I’m more focused on doing what I have come to do (i.e. care for Mom) than I am on doing what Mom wants me to do (i.e. get those damn suitcases out of the living room!). Having lived with her for three months each of the previous six years, I know how little time I will have to do anything that doesn’t center on her. The semi-unpacked rag tag bags are the first sign of how much I have underestimated the enormity of my task.

Whenever Mom walks by the door to the living room, which is thirty-nine times a day if not more, we have a version of the same conversation. Again. And again. And again. And my answer is always something like “yes, Mom, yes Mom, three bags full.”

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Image copyright: yarruta / 123RF Stock Photo

Death & Dying, Life & Living, Music, Poetry

homeward bound: poetic grief and hopeful song

160902 homeward bound

The vapour trails are scarcely visible in the image above, but they were as clear to me as the tattoo in the palm of my right hand as I watched these travellers cross the late summer sky less than three weeks after Mom died on August 17, 2016. Moved beyond measure in my grief, I composed the poem below in tears, just as I had when its mother (night flights to london) had been born  two years earlier. And then when I found the tune at the end? Well, just listen for yourself and see what happens…

homeward bound

a poem by punkie

my heart sails like
two flights at night
with vapour trails:
one pink, one white

you left me here
an orphan now
this bit you never
showed me how

sure you’d be gone
but why’d you leave
without some guide
on how to grieve?

you birthed me fine
and then you died
a lifetime scarce
to say goodbye

it seems unfair
that you should fly
and leave me here
alone to cry

i watch the jets
to london soar
while emptiness
fills up my core

then i recall
how once we ran
and fell in heaps
upon the sand

thank you for
those magic times
the love you spread
the nursery rhymes

i miss you as
i watch the sky
turn sunset into
stars that shine

one day soon when
the moon is round
instead of lost
i will be found

mothers daughters
become just one
and rest entwined
when life is done

here with me
sweet the sound
as angels sing us
homeward bound

 

Homeward Bound
by Marta Keen

In the quiet misty morning
When the moon has gone to bed,
When the sparrows stop their singing
And the sky is clear and red,
When the summer’s ceased its gleaming
When the corn is past its prime,
When adventure’s lost its meaning –
I’ll be homeward bound in time
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow
If you find it’s me you’re missing
If you’re hoping I’ll return,
To your thoughts I’ll soon be listening,
And in the road I’ll stop and turn
Then the wind will set me racing
As my journey nears its end
And the path I’ll be retracing
When I’m homeward bound again
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow

© Susan Macaulay 2013 – 2015. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

https://myalzheimersstory.com/2016/09/11/i-didnt-know-how-soon-youd-go/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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

50 names not to call alzheimer’s me

red flag to a bull cropped

“Calling me ‘dear’ is like a red flag to a bull,” I once said to a friend. “It makes me want to charge. It’s patronizing, condescending, and rude.”

It also rankles me when I hear elderly people who live with dementia being called pet names by others who could be their children or grandchildren. Maybe these folks think it’s sweet to call old people dearie and the like, but it’s not. It’s disrespectful at best, and dangerous at worst. It diminishes and demeans; it’s one of the myriad ways we rob the elderly of their dignity.

Take a look at this revealing 2008 NYT article, which says:

“…a team of researchers videotaped interactions in a nursing home between 20 residents and staff members. They found that when nurses used phrases like “good girl” or “How are we feeling?” patients were more aggressive and less cooperative or receptive to care. If addressed as infants, some showed their irritation by grimacing, screaming or refusing to do what staff members asked of them.”

And Karen Austin reports in Elderspeak: Babytalk Directed at Older Adults:

“Public health experts have found that when older adults are exposed to the patronizing language of elderspeak, their performance on tasks decreases and their rates of depression increase.  Other studies show that even people with moderate to severe dementia can tell when people are talking down to them, and it decreases their level of co-operation.” (Italics mine.)

It’s no wonder older people with dementia respond with anger and aggression. Anyone would. I can see myself behaving exactly the same way if and when I get Alzheimer’s disease and someone tells me it’s time to “wake up dear, get up dear, sit down dear, drink your juice dear, calm down dear, do this dear, don’t do that dear, give me that dear, that’s not yours dear, be quiet dear, go to sleep dear…. ” all the while patting me on the hand as if I were a child, which I won’t be when I’m 80, even if I have a brain disease.

“Stick in your ear dear!” I hear my future self snap. To lessen the possibility that I may be labeled violent and aggressive, and then medicated into submission, I’m laying some ground rules ahead of time. Here are 50 names I don’t like being called now (unless you’re my mother or lover), and will like even less when I’m old and living with dementia; use them at your peril:

  1. Angel
  2. Angel face
  3. Baby doll
  4. Baby cakes
  5. Buttercup
  6. Beautiful
  7. Beauty
  8. Cutie
  9. Cutie pie
  10. Darling
  11. Darlin’
  12. Dear
  13. Dear one
  14. Dearest
  15. Dearie
  16. Doll
  17. Duck
  18. Duckie
  19. Gorgeous
  20. Honey
  21. Honey bun
  22. Honey bunch
  23. Honey bunny
  24. Honey cakes
  25. Hun
  26. Love
  27. Love bear
  28. Love bug
  29. Lovely
  30. Lovey dovey
  31. Peaches
  32. Petal
  33. Pet
  34. Poops
  35. Poopsie
  36. Pumpkin
  37. Pussycat
  38. Precious
  39. Sugar
  40. Sugar pie
  41. Sugar plum
  42. Sugar puss
  43. Sweetie
  44. Sweetheart
  45. Sweetness
  46. Sweet pea
  47. Sweet cheeks
  48. Toots
  49. Tootsie
  50. Treasure

Prefacing any of these with “My” makes them even worse (e.g. My darling, My dear, My love, My precious, My duck, My pet, etc.). You may call me Susan. S-U-S-A-N. Susan. That’s my name. Not dear. Nor lovey. Nor sweetie. Nor Hun.

And by the way, don’t tell me what do either. Consider yourself warned. In a nice way. Sort of 😛

Take my short survey on behaviour here.

Care Partnering, Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

20 expert tips for the driving dilemma conversation

Two of the biggest among the multitude challenges facing many Alzheimer’s dementia care partners are:

  1. “I want to go home.”
  2. trying to get a person with dementia who can no longer drive safely to stop driving

This post is about how to get a loved one to give up their car keys. Why? Because we all want to avoid head-on collisions (and BANGS) both off and on the road.

Top tip #1:

DO NOT attempt the “driving conversation” on your own with a loved one living with dementia.

 Instead, do this:

  1.  Enlist the help of an “expert” outsider whom your loved one respects
  2. Ask the expert to watch the Teepa Snow video below BEFORE the conversation
  3. Give the expert the list of “Tips for Conducting the Driving Dilemma Conversation” (you can download the PDF at the link below the video)
  4. Do a practice role play with your expert (you act the part of your loved one)
  5. Identify pitfalls, develop responses to use with the tips below

Tips for the expert whom you will enlist to conduct the driving dilemma conversation (see disclaimer):

  1. Create a connection
  2. Use “hand under hand”
  3. Make eye contact
  4. Identify the issue
  5. Flag the emotion
  6. Acknowledge competence
  7. Ask questions
  8. Praise & agree
  9. Show you know what they value
  10. Understand their position
  11. Invite them to consider consequences
  12. Offer options
  13. Build self esteem
  14. Be respectful
  15. Be on their side (against common “enemies”)
  16. Accept and value their input
  17. Identify external threats
  18. Offer solutions
  19. Give support
  20. Be a partner

See how many of the 20 tips you can spot in Teepa’s video:

You must give all of this information (i.e. the tips and the video) to the “expert” BEFORE the conversation, because even experts need support to get the job done. Success depends on a team effort.

Key words/questions:

Could we try?

What do you think?

As Teepa suggests:

“Use what you know about their values and what is important to them to help them make hard choices.”

Download 20 Tips for the Driving Dilemma Conversation

Find more great tips here.

Good luck and let me know how it goes!

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