Tag: childhood

Care Partnering, Life & Living, Love, Memories, Poetry

you took me by the hand

My Alzheimer's Story

May 2015: Mom loved anything to do with candy and/or having fun. She had boundless energy, and was forever on the go. When I was two, she dressed us both up as “geisha girls” for halloween trick or treating. The next year we were hula dancers. She celebrated all the holidays. Loved St Patrick’s Day in particular. Her spirit was indomitable, even when Alzheimer disease was doing its best to destroy her brain, and she was being inappropriately sedated to contain her irrepressible spirit. She simply did not give up.

This poem is about not giving up together.

you took me by the hand

©2015 punkie

you took me by the hand

when I was a little girl
you took me by the hand

on hallow’s eves we tricked and treated
as geisha girls or hula dancers
in kimonos and grass skirts

either way you put flowers in our hair
and together we were beautiful

now I visit you every day
wondering if this one will be the last
or will it be the next or the one after that

when death seems close I pray
when it’s not, you take me by the hand

your fingers curl around mine:
soft, innocent, trusting,
free of yesterdays and tomorrows

we have walked off and on countless tracks
alone, side by side, hand in hand

this is the most beaten of them all
from one papered brick wall to another then back
hard wood creaking and complaining underfoot

suddenly the whole world
lies inside an old hotel
and a single step has become a miracle

just as you did when i was a little girl
i take you by the hand

you say: i wish i could go faster
i answer: you can, you are and let’s
as your left shoe inches past the right then vice versa

forgotten hopes and dreams hide and seek between our feet
in this minute, this moment, this time

when I was a little girl
we danced and skipped into the lives before us
now we shuffle and sing and leave them behind

i wear a big yellow tulip and you wear a big red rose
but they’re in our hearts, not our hair

we know the end is near, and yet, so far, beyond our grasp
and together we are still beautiful
when you put your hand in mine

 

© Susan Macaulay 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/2016/04/27/we-too-are-one/

https://myalzheimersstory.com/2018/03/27/i-wish-you-could-see-her/

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Life & Living, Love, Memories

do you see the young woman who once was me?

My Alzheimer's Story
1951-mom-sisters-and-gran
L to R Auntie Lee, Gran, Auntie Jean, and Mom circa 1950/51

This poem touches me deeply. I think of it every time I see images like the one above of Mom and her sisters when they were young women. I think it must have been taken in late 1950 or early 1951 because Mom has an engagement ring but no wedding band. She and my father were married in Vancouver, BC, on November 21, 1951 shortly after she turned 23. I wonder what they were celebrating when this picture was taken? I’ll never know…

Continue reading “do you see the young woman who once was me?” →

Joy, Life & Living, Love, Memories

life is a chorus line if you believe you can can

My Alzheimer's Story

pink-can-can-dancers-cropped-1

September 25, 2014

Dear Mom,

This is the second of two letters to honour your 86th birthday on September 27, 2014, and remind us of the important things in our lives. The first one was about swimming. This one is about dancing.

We’ve done a lot of it. Dancing I mean. Individually and together. We both love it. We are the Ginger Rogers and Fred Astaire of Alzheimer’s. Okay, maybe that’s a bit of an exaggeration but what the hell it’s your 86th birthday. Being a tad “over the top” won’t kill us.  Life often feels to me like a series of random accidents from which some of us recover sometimes and some of us don’t ever. We’ve done a pretty good job of getting through the rough patches so far. More important than the fall is that we’re still up and moving, if not in body then surely in spirit. Our first documented tandem dancing adventure was in honour of your 80th birthday in 2008. I had stumbled on Matt Harding’s worldwide project and thought — you know how I’m always getting crazy ideas — hey! that’s something Mom and I could do together!

We created Patti and Susan’s dance video over the course of the summer:

We two-stepped our way through the Christmas season in 2011/2012. Here’s you and Judy’s husband John cutting the rug in their kitchen:

In February 2012 we met up with a dancing bear at a winter festival in Magog. Guess what? You made a new friend. See more by clicking on the video link of you and the dancing bear.

patti-and-dancing-bear-video-pic-for-blog

On August 4, 2012, we celebrated the Hermitage Club’s white-themed centennial. I hadn’t expected to be there with you, but I knew it would be your last big party and you wouldn’t have missed it for the world. So there we were at a wonderful table in a magical setting. We clowned for the camera and Bev and I discovered we had the same dress:

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You had to “go to the peeps” at one point, and on the way to the ladies room we ran into the chef. Here’s what happened:

When the music started in earnest, we got up to dance and we didn’t stop until our legs gave out.  I’ll never forget it, or at least I won’t until I do. Thanks Mom, for dancing your last dance with me.

Happy birthday ❤

Love,

Punkie

XOX

September 25, 2014

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Care Partnering, Death & Dying, Joy, Life & Living, Love, Memories

can you hear the loons calling?

My Alzheimer's Story
can-you-hear-the-loons-calling
Sunset after a swim; August 14, 2012; Lake Memphremagog.

September 25, 2014

Dear Mom,

This is the first of two letters to honour your 86th birthday on September 27, 2014, and to remind us of the important things in our lives. This one is about swimming.

I must have been afraid when you took me for swimming lessons as a toddler. The teacher had one withered leg; he limped around the pool and reached out to me with a long wooden pole. There were no water wings, or floats, or other new-to-water-other-than-in-the-womb swimmers to share the experience. It was just you and me and the crippled teacher.

I also remember childhood picnics in a park that had a shallow round cement pond into which we plunged after the requisite hour-long respite to digest our peanut butter and banana sandwiches. Turns out the wait wasn’t necessary; swimming on a full stomach is safe as houses they now say.

Years after we lived a five-minute walk from Lake Memphremagog and we swam at will during the hot summers. Our piece of lakefront property had a shallow pebbly beach, and Dad put in raft for us to swim out to. There was a sandy spot on the lake bottom on the way out to the raft where I stopped to rest just before it got over my head. I didn’t like to touch bottom where it was muddy and yucky; I still don’t. I remember you standing on that sandy spot and holding me in your arms as the water caressed us. I was at an age where it was okay to be that close to your mother without feeling awkward. Fifty years later I’m at an age like that again, but in a different, deeper way. Torrents have since flowed under the bridge of our lives.

One pre-teen summer I yelled “Help!” from somewhere near the raft, and was punished with three swim-less days for crying wolf. I deserved it. Another summer you introduced me to the pleasure of “skinny dipping,” which we did after dark under starry skies. I adored it.

Although you’ve always loved the water, you’ve never been a strong swimmer. But you encouraged me to be. I earned my Red Cross bronze medallion in my late teens and worked as lifeguard at a local campground one year. When I was at university I swam almost every day; it helped me stay sane and centred. Three decades down the road at peri-menopausal 49, I completed my first sprint triathlon. My training included an hour each day in the pool. Again, it helped me stay sane and centred.

In 2005, while body surfing off Jumeirah Beach in Dubai, I was ground into the seafloor by a wave like  a cigarette butt might be crushed into an ashtray. The emerg doc said I was lucky not to have broken my back. He put four stitches in my lip, salved the raw scrapes all over my face and sent me home with my tail between my legs. I never told you.

Your lakefront lot provided a seasonal refuge for forty years when you lived in the big red house on the hill. There was no pebbly beach there, rather a direct slate drop to the water fifteen feet below. You had solid wooden stairs and a dock built. Someone put a ladder into the water in the spring so you could easily get in and out; it was taken out in the fall so the ice wouldn’t break it.

You and I swam from the dock hundreds of times, often naked even in the middle of the day because there was no one around to see or judge us. It was fun and naughty. We laughed and enjoyed the water’s sensuality. We were refreshed and rejuvenated; it was one of life’s simple pleasures. Afterward, we sat and watched the speedboats and sailboats zoom and slice by. In recent times you spotted the same boats over and over and over again.

“Look at that big boat Punkie,” you’d say and point.

“Oh yeah, that’s a big one,” I’d agree. A few minutes later you would repeat: “Look at that big boat Punk,” as you pointed. “Oh yeah, that’s a big one,” I would agree again. And so our softly broken record replayed: you forgetting what you had just said; me practicing patience with mixed success; the lake kissing the dock in little wavelets.

On July 22, 2012, we went down to the lake for a dip. The water was grey velvet and black. You swam alone and heard loons in the distance. You asked if I could hear them too. I filmed you with my iPhone. Last night, I stumbled across the video. Toward the end you are caught in the reflected light of the setting sun. As I watched, my heart filled with love, gratitude and grief. And I cried.

 

 

Thanks Mom, for teaching me how to swim.

Love,

Punkie

XOX

September 25, 2014

Hope, Joy, Life & Living, Love

my alzheimer’s mom counts

My Alzheimer's Story

FiveFlashback July 29, 2014 (some of the links in this article are broken; apologies): Most five-year-olds can count to five and beyond. If you ask them how old they are, they’ll hold up one hand fingers splayed to show and tell you at the same time.

My 85-year-old Mom doesn’t know how old she is anymore. Sometimes she doesn’t remember how to use a fork or a spoon. But she surprises me every day with what she can do, and how resourceful and resilient she still is even in the late stages of Alzheimer’s disease.

She inspires me with her strength, courage and determination. The sheer power of her will and the force of her personality are something to behold. We have struggled through this life together and apart and I see her (and myself) more clearly each day. I appreciate the time we have together now, heart wrenching though it may be.

In a post about unconditional love and friendship, I wrote:

More silence. The clock near the front door strikes the hour. Mom used to love counting the strikes silently in her head, then announcing the total aloud at the end.

“Seven!” She would have said a year ago. Not anymore. Not for months.

About a week and a half later, Mom and I sat quietly at my place, just being together in the same space. One of her beautiful antique clocks tick-tocked softly in the background. Here’s what happened when the clock chimed the hour:

 

 

I relearned for the umpteenth not to underestimate what goes on in my mother’s mind. She may communicate in a language that’s often hard for me to understand, she may be trapped in a body and a brain that don’t function anywhere near capacity, she may scare me to death when she knocks on heaven’s door, but that doesn’t mean she doesn’t count. She does. We all do. It’s important to remember that.

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Family, Life & Living, Memories

on mothers, daughters and bad hair days

My Alzheimer's Story

susan wannabe model“Oh Punkie! “ (That’s my nickname.) “I’m so glad to see you! You look great! I love your hair,” Mom would say every time I came to see her.

Or at least that’s what I wished she would have said. To be fair, I usually did get the “I’m so glad to see you” part. It was what invariably followed that cut like a knife.

“Your hair’s so short. What did you do to it? I like it so much better a bit longer.” Or: “Your hair’s so long… Don’t you think it’s time for a cut?” Or: “When did you start parting your hair on the left? I think it suits you better on the right, don’t you?” Or: “When did you start parting your hair on the right? It’s so cute when you do it on the left. Here let me show you…”

Yes, there has always been something wrong with my hair, it was too long, too short, too curly, too straight, too recently cut, not cut recently enough, better up, better down, and/or better the way it was last time, even though last time it had been so much better the time before that.

Yes, there has always something wrong with my hair, and clearly, by extension, there has also been something wrong with me. My hair and its not-good-enoughedness is a metaphor for me and my ongoing failure to measure up. I am a cracked and broken toddler who has somehow managed to stumble my way through 55 years of life beyond the “terrible twos.”

Sometimes I am lost and found. Other times I’m invisible. One time, in my adolescence, when my mother and I were visiting my grandmother, it was decided (certainly not by yours truly) that I should get my hair cut at my grandmother’s hairdresser.  Her name was Giselle.

Susan grade 9Like me, my hair was particularly hard to manage in my teens. In those Grade-9 days (<= see), the fashion was to have your bangs (“toupette” if you’re Quebecoise, “fringe” if you’re a Brit) hang in your eyes like a sheepdog. No doubt this drove all mothers of teenaged daughters, not just mine, crazy.

As I set off for Giselle’s, I knew it didn’t matter how short she took my bangs, they would not be short enough. Giselle razored them to what surely would have been a reasonable length, a length in keeping with the cut. But I, to please my mother and avoid a fight, asked Giselle to cut them “just a little bit shorter, please.” She complied. Reluctantly. She was a hairdresser after all. She knew hair shrinks skyward when it dries. But I was short on experience, and long on suffering my mother.

I returned to my grandmother’s house in a flood of tears, my bangs a few millimeters short of my hairline, my life, clearly, over. As I walked in the door, my grandmother clapped her hand over her mouth, and began to laugh. My mother followed suit.

“What happened to your hair?” They choked in unison. The flood became a tsunami. I raced upstairs, flung myself on Gran’s guest bed, angry, humiliated, and inconsolable. For the eternity (i.e. several weeks) it took for the disaster to repair itself, I wore my hair in a bald man’s comb-over to hide the abomination of my bangs and avert the ridicule of my classmates.

I went on to become prematurely silver in my late twenties, expanded into being a cut above during the continuum of my thirties and forties, and blossomed fully in my fifties. (Ongoing transformation is the story of my life. I wonder what the last chapter holds…?)

Mom doesn’t care so much about my hair anymore. And it sometimes takes her a minute or two to figure out who I am when I go to visit her. But once she realizes I’m related to her, that I’m part of her family (perhaps her daughter, or maybe her sister), she smiles, grateful, and says: “Hi Punkie! “ (She remembers my nickname so far.) “I’m so glad to see you!” No mention of my errant hair, even if it’s streaked with pink or purple.

Better late than never, I guess, but bittersweet all the same.

 

Written in spring 2013.


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Family, Love, Memories

Oh Mom! (A mother/daughter moment remembered)

My Alzheimer's Story

Susan & Tavi
“Oh Sue.”

I’ve heard those words from my mother at least a million times:

“Oh Sue, you’re so opinionated. Oh Sue, you’re so serious. Oh Sue, why do you have to be so argumentative? Oh Sue, did you have to get your hair cut THAT short?” Oh Sue, something-or-other-that-doesn’t-quite-measure-up.”

Maybe that’s partly why I prefer Susan now, Sue having fallen short in so many ways for so long.

Like many mother/daughter relationships, ours has been fraught with issues and challenges (as well as joy and happiness) about which I blogged on Mother’s Day 2012.

So, it’s curious that the one “Oh Sue” I remember most specifically isn’t a criticism, but a little cheer. And I hear it as clearly today as I did forty-four years ago across a riding ring one late-summer afternoon.During that awkward leaving-girlhood time, Mom drove me once a week, from July 1st to the end of August, to the Pony Club in Knowlton for riding lessons. She also drove me crazy. As I’m sure I did her. I don’t remember much of those 90-minutes-to-Knowlton drives, but I can still taste the dust our mounts kicked up as we walked, trotted, and cantered round the riding ring.

Our instructor, Fiona, stood at the center barking commands in her proper English accent, while we, a dozen or so horse-crazed pre-teens, submitted to the ordeal with dogged determination.

“Cannon.” “Elbow.” “Fetlock.” “Gaskin.” “Hoof.”

We shouted alphabetical horse body parts as we rode, and tried to keep our seats at the same time. Some of us were less successful than others, thus the need for hard hats. All the while, Mom leaned on the fence watching, head propped on crossed forearms, one foot up on the bottom rail. She must have been hot, tired, sweaty, and thirsty (I know I was!), but she never complained. That was my job.

When our riding time was done, the post-lesson tack cleaning often brought out the cranky in me. When it did, Mom took me to a little greasy spoon for lunch on the way home. It had a screen door that clanked shut, and an old-style ceiling fan that wasn’t of much use, even on only warmish days.

We’d have hamburgers, French fries and strawberry milkshakes. Just thinking about it now makes me slightly queasy. I imagine I got carsick more than once as we drove back.

Each Pony Club summer ended in grand style with a one-day “Horse Show.” Bleachers sprang up at one end of the rectangular ring. Parents crowded into them. Others brought their own ringside seats. Mom opted for her usual place on the fence.

The first year, when my beginners’ class was announced, I trotted, or rather Tavi, my favourite Pony Club pony trotted I astride him into the ring. I felt all grown up as well as nervous competing in my first official equestrian event. I remembered to keep my hands soft, my heels down, and my eyes focused on where I wanted to go.

I didn’t know it then, but I surely know it now: those basic skills apply as much to life as they do to horseback riding. We went round and round, as we did during our lessons, but instead of filing out at the end we lined up in the middle of the ring. Just like in a dog show, four or five of us would be invited to make a couple of last laps to help the judge finalize her first-, second-, and third-place choices.

I looked straight ahead, heart beating fast, hopeful. Three of my co-competitors had already been chosen.

“Number 12,” the judge said with a wave. Before it registered that I was number 12, I heard a cry, loud enough for everyone in the next county to also hear: “Oh Sue!”

My face turned tomato red. Somehow I managed to squeeze my knees gently to urge Tavi on from a standstill.

“Oh Mom!” I thought to myself as we got underway. “How embarrassing! Calling my name like that in front of everyone! How could you?” I buried my humiliation in my concentration. “Keep your legs still, seat firm in the saddle, fingers like sponges around the reins,” I reminded myself.

After a few circuits, we were back in the middle, five finalists each hoping for first place. There was a hushed expectancy in the air.

“And the red ribbon in this year’s novice class goes to…”

I held my breath; it held me back, stiffly.

“Number 12! Susan Macaulay!”

This time, there was no singleton cheer from the peanut gallery. Somehow she must have sensed my embarrassment the first time around. But I could see her, out of the corner of my eye, one hand clapped firmly over her mouth, the other waving high and wild. She was jumping up and down. Oh God.

Tavi walked forward, and I collected my prize. I don’t think I’d ever won anything before.  Some unknown photographer captured the moment, and the resulting image is one of only a dozen or so pasted in my pre-teen scrapbook. I look all business for such a little girl.

Outside the ring, I dismounted, formal, yet shy, tiny trophy in hand. I heard a whisper in my ear: “Oh Sue! I’m so proud of you.”

I shrugged out of her hug, rolled my eyes, and answered back: “Oh Mom!”

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