August 24, 2012: Mom says her prayers every night, and having her prayer beads wrapped around her fingers is a huge comfort for her.
“Where are my beads?” She asks after I pull the quilt up around her chin. I keep them close on her bedside table, so they are always within easy reach.
“Here they are Mom,” I scoop them off the pine table top and let them cascade into her open palm. I am inspired to write a poem about this and other Alzheimer’s rituals:
An Endless Prayer
She has fat little fingers now.
Her precious rings don’t fit them anymore.
At night, she counts her rosary:
one bead after another after another after another.
In the day, she sits and strokes the tops of her legs:
up and down up and down up and down.
Her hands, like the days and the nights are
soft, gentle tides going in and out in and out in and out on a desert island.
I wonder what she feels as she comforts herself and gazes,
seemingly lost, into the near and far.
She turns, touches my arm.
“Hi Punkie, I’m so glad you came to see me,” she says.
My heart is in a million pieces.
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.
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!”
September 2013: Mom and I won second prize in the What I See Project‘s worldwide video contest about seeing what you see in the mirror. I’m so grateful we chose to participate in the contest and to preserve the special connection we have. I encourage everyone to be in the moment and to document shared times like these.
Here’s the video, called (descriptively yet somewhat unimaginatively LOL) “I See You and Me:”
What do YOU see in the mirror? Maybe you will find out before I did that in the end we are one.
(And NO! she hasn’t paid me to say that. I call it like I see it, and this book is a great read for anyone who has been, is now, or soon will be caring for someone with Alzheimers dementia.
Even those who have been through the journey to the end will get something from the book.)
Flashback summer 2013: My Mom has never been at a loss for words. Until now.
A brain gone awry and antipsychotic medication often silence this consummate “schmoozer” who once talked to anyone, anywhere, anytime about anything. Now she’s subdued and compliant. Except when she’s provoked (in which case you might get a slap), or when she sings. Oh yes, when the medication wears off she still puts up good fight (to the dismay of some), and sings with gusto (to the delight of others).
She knows all the words to all the old songs. Seemingly hundreds of them. She even sings in her sleep. Music is therapeutic for people who have dementia, and it surely brings Mom great joy. Conversing (conversely) has become increasingly problematic. Mom’s sentences still have subjects and verbs, but often lack objects. Like her, they tend to wander aimlessly, lost and alone.
Also like her, they may take a few steps forward then stop dead in their tracks, suspended mid-thought above an Alzheimer’s abyss into which they disappear unless someone snatches them from thin air and tosses them onto meaningful ground. That’s my job: snatching and tossing and throwing it all into a daily batch of homemade Alzheimer’s alphabet soup.
“We’ve got to…,” she starts. “To…. To….” Then nothing. Nada. To jump, swing, sit, stand, talk, listen, eat, sleep, give, rake, bake, shake, or “go to the peeps” perhaps? Take your pick; fill in the blank. It’s easy to do with a sentence, less so with the vacant look on her face. She doesn’t laugh much anymore, her sense of humour having recently gone AWOL. It’s partly because of the drugs she’s being given, the drugs she would be taking less of if I were in charge. But I’m not. A mask-like face is one of the side effects of Risperdal, a bi-polar disorder anti-psychotic which is also prescribed to Alzheimers patients. It has robbed her of many of her facial expressions.
I miss Mom’s smile, her frown and her feistiness, though some of the latter remains, to the chagrin of those who cross her unknowingly! How can I miss her before she’s even gone–this woman with whom I have struggled for at least a lifetime, maybe more if the Buddhists are right? On the other hand, how can I have come to love the person she has become, even though that person is so unlike the one she once was? I wonder about life. And time. She wonders about nothing much. Or so I thought. I’ll find out later when there’s a break in the Alzheimer’s clouds.
“That’s a nice…” she says. “A nice…a nice…a nice…” She searches. Draws another blank. Unknowingly invites me to practice improv.
“Pair of shoes?” I offer.
She goes with it: “Shoes. These are my shoes. I made them myself.”
“I know you did Mom. You did an awesome job. Nice colour.”
“What colour?” She queries
“They’re beige Mom. Your new shoes are beige.”
“My shoes are beige,” she repeats.
“Yeah. Your new shoes are beige, Mom. You like them.” I lift a glass of water (wishing it were wine) from the chair-side table, raise it to my lips, take a sip, and wait for what’s next.
She observes: “Yeah, beige. They drink shoes on the water over there.” Her damaged brain creates a random connection between the water I’m drinking, the shoes she’s wearing, and some unknown destination. There’s something to be said for random connections. So I forge ahead and make another one.
“They drink shoes?” I query.
“Yeah,” she agrees.
“I bet they do it in their pockets,” I say. Mom has her own version of rhyming slang, and any mention of “pockets” is guaranteed to elicit its kissin’cousin “sockets.”
“Pocket socket,” she says, as I knew she would. “Pocket socket.” I confirm. This is the stuff of mid- to later-stage Alzheimer’s “conversations.” So are snippets such as: “Do you want to put the tea bag in the pot Mom?” To which she replies: “Yeah. Put the tea bag in the pot or the tea bag in my hair on the corner.” Or she says: “We have to try to get the boy on the surface because poor subpoena.” To which I answer: “Subpoena?” And she replies: “Poor subpoena didn’t get enough to eat.”
But every now and again an unexpected ray of clarity scissors through the fog like a shaft of light piercing a cloud bank at sunset. These are fragile and wondrous moments of astonishing beauty. They may be joyful, tearful, soulful, and tragic (or any and/or all of the above and more). They may last for seconds, minutes, or even hours before the clouds fully block the rays again or they fade into twilight then darkness.
When the Alzheimers clouds break, I am the one who finds herself at a loss for words. That’s when I learn that Alzheimer’s soup is a sentence that’s all about love.
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Being the primary caregiver for someone with dementia of any form (including Alzheimers) is extraordinarily difficult. Each day comprises a rollercoaster of emotions that make coping with even simple tasks a monumental chore. I find acknowledging what I feel is a huge comfort.
Acknowledgement is the first step to acceptance and acceptance is the foundation of the healing process that is as much a part of this journey as the pain and the joy (and yes, there can be joy in the ruins).
Nothing prepared me for dealing with this disease and being someone’s primary caregiver. My role as a care partner is now about a decade long and I still experience the same feelings, sometimes for the old reasons, sometimes for new ones.
Here’s a list (by no means complete!) of some of the “downs” (some “ups” here) on my Alzheimer care partner rollercoaster:
1) Despair
at being helpless in the face of this disease that seems so random, cruel and senseless.
2) Frustration
with things big and small like not being able to find a cooking pot or utensil when needed because the person living with dementia has put it in some unknown location or not being able to manage sometimes aggressive language or behavior or not being able to get proper high-quality care for people living with dementia.
3) Anger
at the person with dementia and the disease and myself and everybody because of all the shit (literal and figurative) we collectively go through as care partners. Anger at my own behaviour and the behaviour over which people with dementia respond, and at others who don’t “get” the disease or understand a loved one’s needs and who block efforts to alleviate the suffering caused by external stuff that could be fixed.
4) Guilt
that I couldn’t, can’t and won’t be able to do more for the person I love who lives with dementia; that I sometimes lose my temper or express my frustration or am not as compassionate as I might be. Guilt that I was not, am not and never will be Mother Teresa. Not even close!
5) Sadness
that so many amazing lives end in such a tragic way; that people are slowly robbed of precious gifts — awareness, memory and the capacity to think and act rationally — and that so many care partners suffer as they try their best to care for their loved ones with little support, understanding and resources.
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I knew the day of the week (which I often don’t), the month and the year, but I didn’t know it was the 21st. That’s hardly surprising as I don’t keep track of the days of the week or the dates.
The nature of my life means most days are pretty much the same: I work, I play, I laugh, and I cry almost every day. I’m lucky that way: I live my life fully every day. It doesn’t matter much if it’s Monday, Wednesday, Friday or Sunday. And it makes no difference whatsoever if it’s the 1st, 10th or 27th. I don’t hold on tight to dates and days. No need to.
I do hold on tenaciously to my values, hopes and dreams on the other hand. They are the cornerstones of my life. At the moment, I also have a relatively firm grip on many of my memories.
Today, I still recall the two sets of words the nurse had told me to remember yesterday. The first group of three was: shirt, brown, honesty. The second group of five was: face, velvet, church, daisy, red. There were three animals in the test: a lion, a hippopotamus and a camel. I had to draw a clock showing the hands at ten past eleven. I also drew a three dimensional cube.
Someday my memories will elude me. But not yesterday. And not today.
Could their chairs be any closer together? Gaby and Mom, August 27, 2013.
Flashback August 27, 2013: I love to treat Mom and her BFF Gaby to lunches and dinners at my place.
Mom, who is in her mid eighties and living with the later stages of Alzheimer’s disease, can’t really carry on a “sensible” conversation anymore. Her friend Gaby is 97; most of her marbles are still very much intact. Gaby’s only major complaint (about which she hardly complains at all) is the corn on her foot, which sometimes makes it painful for her to walk. She’s also becoming a tad hard of hearing. Other than that, she’s golden.
Mom and Gaby found each other at The Home, where Gaby has lived for about six years, and Mom coming on a year now. They met after Mom moved into the room next to Gaby’s, and they became neighbours. Their friendship is flourishing, despite Mom’s ongoing slide into dementia. They share a table, along with two other residents, in the dining room at The Home; they have breakfast, lunch and dinner together. Mealtime conversations are infrequent. People waiting to die don’t have much to say it would seem.
I visit Mom and Gaby at The Home almost every day, and I bring them to my place once a week for lunch or dinner, one of the few small pleasures they’re still able to enjoy. The atmosphere is loving and lively at my place. The three of us find more to say, to do, to be and to sing.
On this particular early summer night, Mom and Gaby help set the table. They hold hands and teeter slightly as they arrange the knives and forks while I prepare a simple feast: tuna salad with celery and mayonnaise, a few leaves of local lettuce, crisp carrot sticks, golden-toasted sesame seed bagels, and mixed olives.
They drink orange juice in crystal highball glasses I took from Mom’s real home when we decamped, and I sip sauvignon blanc from a funky goblet my cousin gave me. After dinner, I make Mom and Gaby comfortable on the back deck, then ferret out something “delicious and nutritious” for dessert: fresh peaches with yogurt and honey. On the way back to serve them, I stop short of the screen door that opens onto the deck, and pause to eavesdrop on their sunset conversation.
“Isn’t that a beautiful sky?” Gaby says to Mom.
“Yeah, and I told them it was. Dad thinks so too,” Mom looks around. “Where’s Dad?”
“Yes, you did,” Gaby says. She waits for this to sink in before she goes on. “He went to get our dessert.”
A moment of silence. Then another. Then several more. Gaby reaches over and gently feels Mom’s left arm, which is bruised because of the Coumadin Mom is being given to stop blood clots from forming in her swollen legs. She used to stride, purposeful; now she shuffles, uncertain, because of the drugs she shouldn’t be taking.
“Are you cold?” Gaby asks.
“No, I don’t think so,” Mom says. She pauses; searches. “Do I feel cold?” A fresh breeze blows through the screen door. Goosebumps rise on my arms; something in my chest squeezes like a sponge.
“You feel a bit cold,” Gaby says to Mom as she withdraws her hand. Together, they hold space for each other: Gaby in the slightly laboured rasp of her breath, Mom in the tissue she folds and unfolds, folds and unfolds, folds and unfolds in the cradle of her lap. The sun sinks a little more.
“Are you cold Gaby?” Mom asks. It’s not unusual for her to parrot what’s been said to her. It’s a way for her to conquer the aphasia that steals more of her words each day.
“No,” Gaby says as she turns to look at her friend. “I’m not cold. But you feel a bit cold.”
“I do?” Mom says.
“Yes,” Gaby affirms. Whatever Mom says, Gaby agrees. They never argue.
More silence. One looks this way, the other one that. They stare at nothing in particular: nothing in particular being the main thing they contemplate day in and day out. They have many days in. Days out are fewer and farther between. Gaby swings her right foot, and inadvertently kicks Mom’s left.
“Did I hurt you?” Gaby worries.
“No,” Mom replies.
“I wouldn’t want to hurt my friend Patti. You’re my best friend.” Gaby touches Mom’s arm again.
The sun keeps setting, as it is wont to do on kindred spirits everywhere, each day earlier and earlier until late December, then later and later until late June, when the cycle recycles itself. I guess it’s the other way around in the southern hemisphere, and different again at the poles.
Gaby and Mom don’t care about the hemispheres or the poles. They don’t worry about the length of the days: short, long, makes no difference. They’re all the same. Except days like this, when they get to go out. These are special days, even if they don’t remember them. I vow to myself that I will, until, like Mom, I don’t anymore.
“Your hair looks nice, Patti,” Gaby says. I wonder how many times Gaby has paid Mom this compliment today. Three? Five? Ten? More? Mom says nothing. She touches her head with her right hand. Pushes a roller-induced wave in and up. Still nothing. Perhaps she’s already forgotten Gaby’s words. Or maybe she needs a mirror to confirm their veracity. Not knowing the truth of one’s own reality is part of the disease.
“And that top looks beautiful on you. You have the nicest clothes,” Gaby continues, heaping one heartfelt compliment on another because she adores her friend. Mom looks down at herself. She moves her hands to just below her waist and pinches the bottom of the light-beige-and-white-striped shirt she’s wearing. She stretches it down and out to see it better. The stripes in the top match her caramel capris.
“Do I?” Her voice is flat, her face expressionless–more side effects of the medications that make her shuffle instead of stride.My hands tighten on the bowls of peaches and yogurt when I think of the drugs, the ones that kill my mother’s vibrant personality for convenience and cost saving.
“Oh YES! You are so stylish.” Gaby bursts with enthusiasm.
“Am I?” Mom doubts.
“Oh yes! Very! I wish I was stylish like you,” Gaby says, her grin as a wide as the horizon. “And you have such beautiful rosy cheeks. I love your rosy cheeks.” She leans in closer; her hand once again rests like a crooked feather on Mom’s arm. She plants a slow kiss on the pinkish flush of Mom’s left cheek. She’s oh-so-careful not to bruise her. Mom says nothing.
“I’m glad I’m here with my friend Patti, enjoying the sunset,” Gaby continues.
Mom seems not to have heard. “Is it time to go home yet?” she asks.
“Almost,” Gaby replies. She slides her hand down Mom’s purple-splotched forearm, and curls her craggy fingers around Mom’s soft, plump ones. “We’ll go together,” she says, and kisses Mom again.
I swipe the back of one hand under both eyes, nudge open the screen door with my foot, and step into the oncoming twilight.
In honour of Mom and Gaby who are surely raising Cain, wherever they are now.
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November 16, 2012: Today is moving day. My Mom Pinkie Patti leaves her home of forty years to go into another kind of “home.”
The kind you go to when you don’t know where you’re going or what you’re doing anymore. And she doesn’t. She won’t know when she opens her eyes this morning that it will be the last time she’ll cast them on the sunlight streaming through her bedroom window.
Dawn is just about to break, the sky is streaked with pink and blue, and a light frost coats the trees and fallen leaves all around the house. She didn’t know yesterday it would be the last time she would enjoy breakfast in her kitchen, clean her counter tops, or stare into the crackling flames in her fireplace. These small joys will belong to someone else someday, someone who may never know how much each of them once meant to Patti.
She doesn’t know she won’t dance in the goldenrod in her field again, or swim naked with me in the lake or walk in the winter wonderland behind her house a Christmas. Somehow the fact that she doesn’t know seems to make her imminent departure more tragic. But none of us know when we’re going to leave the life we’re living. We may be snatched away at any moment, with no inkling the breath before was to be our last. It can happen at nine months, nine seasons or ninety-nine years.
To coin and combine two old cliches: that ignorance is bliss may be a blessing in disguise. Unlike me, who has cried a million tears, Pinkie Patti hasn’t spent the last minutes, hours, days and weeks mourning the loss of her life as she knows it. She has lived it.
She hasn’t worried about saying goodbye to all that is familiar to her, including her beloved cat Pia Roma. I wonder how Pinkie Patti will be in her new home. Mercifully, and ironically, because of Alzheimer’s disease she will forget this one before long.
She will forget all the joys and sorrows with which we have infused its three-bricks-thick walls. But life will still live here; it will be re-awakened by others at some future time. And Pinkie Patti will create new joys, sorrows in her new place before one day saying goodbye and leaving for her final destination.
As for moving on, there’s comfort in knowing that, in the end, no matter how far and wide we travel, and for how long, all roads eventually take us home.
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She hasn’t worried about saying goodbye to all that is familiar to her, including her beloved cat Pia Roma. I wonder how Pinkie Patti will be in her new home. Mercifully, and ironically, because of Alzheimer’s disease she will forget this one before long.
My Alzheimer's Story 