crying – My Alzheimer's Story

still flying those night flights

August 14, 2017August 14, 2017 My Alzheimer's Story

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.

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Care Partnering, Life & Living, Love, Memories

the day our best wasn’t good enough

November 16, 2016November 15, 2018 My Alzheimer's Story

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.

The 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 16^th 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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Love, Memories, Poetry

night flights to london

September 3, 2015June 17, 2017 My Alzheimer's Story

On an August night in 2015, as I ate supper on the porch of the house I rented at the time, I glimpsed a white line above the sunset horizon. A tsunami of emotion swept through me and I began to cry. It was one of those chest-heaving, choking kinds of cries, the ones accompanied by lots of fat rolling tears.

I was reminded of the many summer evenings Mom and I had sat on the deck at the back of her big red brick house on the hill eating salad made with greens fresh from her garden. A steady stream of night flights to Europe invariably flew overhead as we dined. She always remarked on the planes, and when the dementia began to take hold each one of the dozen or so that crossed the twilight sky became the one to London, the one I would take when I left to go back to Dubai.

In the years before my 2011 return to Canada, I spoke with Mom almost daily on the phone. At the end of every call she would ask me when I was coming “home.” If my visit was imminent, she would be ecstatic: “I can’t wait to see you!” Otherwise she would rue: “Oh. Not before then? I’d hoped it would be sooner…”

When I saw the stream of vapour on that August night in 2015, I was flooded with sadness for all the times she must have looked to the sky when I wasn’t there, thought of me and prayed for my safe return. I imagined all the times, as the dementia progressed, that she was terrified to be alone in the big house by herself.

Eventually she got her wish, but not in the way she would have wanted or expected. After the tears abated, I wrote this poem:

night flights to london

by punkie

tonight as i ate
shrimp salad on rye
i noticed the streak
of a jet in the sky

i choked on a thought
and started to cry:
“life! leave me alone,
let sleeping dogs lie.”

i remembered the days
when we supped in the back
with the sun sinking low
until all had turned black

we drank and we laughed
and we had a good crack
“look punkie,” you’d say
as you gave me some flack:

“there’s the night flight
to london up in the sky
i wonder who’s on it
for what, whom and why?

i wish we could go there,
do you think we might try
to travel afar one day
you and i?”

“that would be fun mom”
i agreed in reply
while i sipped on fine wine
with a tear in my eye

“we’ll go in september,”
i told a white lie,
“your birthday is then
and a ticket i’ll buy.”

a moment passed close
then a lifetime, then two
as we sat in the dusk
with the deer and the dew

we pretended in silence
our dreams might come true
how else could we manage
to make our way through?

“look punk, it’s there!
look up in the sky —
the night flight to london
that goes on to dubai

i can’t help but miss you
when i see it on high,
why can’t you just stay
right here by my side?”

god granted your wish
though not how you thought
dementia delivered it
then left us to rot

but we turned the tables
and twisted the plot
to find healing and joy
in the battles we fought

now it’s just me
with chablis and blue sky
my appetite lost for
shrimp salad on rye

i weep at white tails
of night flights that fly
all headed for london
then on to dubai

August, 2015

© Susan Macaulay 2015. 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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Care Partnering, Hope, Life & Living

cracking wide open on the radio

October 5, 2014October 15, 2016 My Alzheimer's Story

140926-susan-cbc-radio — Selfie in the Quebec AM, CBC Radio One studio September 26, 2014.

Flashback September 26, 2014: I write and share my experiences to give purpose to this Alzheimer’s journey of Mom’s and mine. There must be a reason (I reason) for our struggle and suffering. Perhaps you are part of the purpose! I hope My Alzheimer’s Story captivates, inspires and/or comforts you. If it does, please share the love like I am 🙂

In March 2014, I spoke about My Alzheimer’s Story with Quebec AM, CBC Radio One and on-air host Susan Campbell on location at Lennoxville Elementary School. The interview is here. Campbell began following the blog and recently asked me to do a follow-up segment. We did the second interview the day before Mom’s 86th birthday. As we chatted, Campbell asked me about some of the special times I’ve had with Mom, in particular an exchange of “I love you’s” I captured in video in “the most important thing to do when you hit a rust patch.”

I told her the truth: those moments crack me open. Yet through them I’ve experienced a lot of healing. My hurts, disappointments, resentments and negative feelings have been washed away leaving behind a bundle of tenderness, intimacy and beauty in the relationship with my Mom. Getting there hasn’t been easy, but it’s been worth it.

At the end of the interview, which you may listen to here, I read an abbreviated version of “a daughter’s prayer to god,” a poem I wrote when Mom was very sick in May. I managed not to cry the whole way through as I did when I read it aloud for the first time. Several friends who had read the poem told me how powerful it was to hear it spoken. Campbell said her producer Alex, a bear of a man whom I had met at our initial on-location interview in March, had been moved to tears by it.

I’m so pleased people are being touched by our story (see purpose above). In a couple of weeks I’m “guesting” at a half-day college class; I intend to share and discuss some of the audio and video clips from the year I cared for Mom in her own home. I wonder how the students will respond? Will they react like Alex did? Will they feel the joys and sorrows?

Maybe all of us will crack wide open. Maybe that would be a good thing.

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still flying those night flights

November 16, 2017:

November 16, 2015:

November 16, 2012:

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night flights to london