Sunday Mornings (Song for a Woman with Alzheimer’s Disease)

Intro: For years my favorite people in the world (next to my kids) were the tutors in the Writing Center at Union College in Schenectady, NY. I just got an email from one of them, Charlie Agar.  Years have passed and he is now entirely grown-up. [You are, right, Charlie?!] He is walking to fight Alzheimer’s and asks for my support. Funny how lives criss-cross. These days I tell stories to nursing-home patients with Alzheimer’s, and every Sunday I sit with a woman in her home so her husband can go to church. Here is a story I wrote about those Sunday visits. It’s sad.  Maybe next time I should post my story about the international gopher museum–not sad in any way at all. Not to forget…to support Charlie, go to http://memorywalk.kintera.org/hays10/alzcare274.

Sunday Mornings

I sit with her on Sunday mornings so her husband can go to church. For more than thirty years, they used to go together. Often she would be asked to speak during the service.
“She was the smart one,” he says. Now he goes alone.
An RV rusts in the side yard. When she and her husband first learned of her future, they traveled round the country to make the most of whatever good time she had left. Inside the house, old-fashioned crafts, cookbooks on a kitchen shelf, photos of her children tell me of the woman she used to be–photos of her grandchildren of joys she can never experience.
She is too young, not much older than I, to be suffering from advanced Alzheimer’s. She can’t walk, can’t even change position in her bed or recliner. She can’t dress herself or feed herself. She can’t speak. She’s been this way for years.
Every Sunday, before I come, her husband bathes her, dresses her, feeds her, and props her up in her recliner or lays her back in her hospital bed in the living room. And when he goes, I sit in the chair beside her. I read or knit, recite poetry aloud, or tell her stories. Usually she ignores me. Sometimes she looks at me as if puzzled, as if to say, “Who are you and why are you here?” Sometimes she seems enraged and I stop whatever I’m doing at that moment or resume whatever it is I stopped doing or just get back to my reading or knitting. She never looks happy. She never smiles.
Sometimes I stroke her forehead and cheek for a short while. She may close her eyes. Once, when I stopped, she drew the back of her hand to her cheek as if to stroke her face herself, but mostly she lies quietly, apparently indifferent. Sometimes she gets angry and I draw my hand away. And she never smiles.
It is quiet these Sunday mornings. Her husband leaves the radio playing softly, oldies mostly. I don’t think she pays attention. I have a quiet time to read the Sunday paper, to catch up on unread books, to knit for hours without interruption.
One small detail about this routine is odd. Every week for all these months, I find myself singing to her, singing the same song, in French, no less. Surely I would at least sing a song likely to stir some old memories in her ailing brain. But no, I sing a French-Canadian folksong that I learned decades ago in French class. Heaven knows my voice is flat and off key. When my children were little, they used to beg me not to sing. Still I sing this old folksong every week. She looks my way, or ignores me, or gets angry. If she looks angry, I stop. She doesn’t smile.
“Ah, si mon moine voulait danser…un capuchon je lui donnerai….Danse mon moine danse, tu n’entends pas la danse, Tu n’entends pas le moulin lon la, Tu n’entends pas le moulin marcher.
“If my monk wanted to dance, I would give him a hooded robe….Dance, my monk, dance. You don’t hear the dance. You don’t hear the mill. You don’t hear the mill running.”

Why on earth do I sing it? After all, it’s just a light-hearted song about a girl tempting a monk to dance.

One night I woke up in my own bed, finally understanding what the song means to me and why I sing it. I have thought of myself as a bystander to her troubles. True enough, little is asked of me when I sit with her. But I am not merely knitting the morning away so a husband can have a break. I am affected too. It occurred to me that I’ve been singing the song for myself. I ache for a woman unable to know either the pleasures of life, like the music of the dance, or the work of life, like the sound of the mill grinding grain for a village.
Over and over again, I invite her to dance and mourn the reality. She cannot. She can’t even smile. And I care.
I’ve decided—I shall make a card to carry with me as long as I have my wits about me. On it, I shall write, “Hear the dance.” And I shall remember to smile.

Copyright by Margaret French

 

Find the song here.

 

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Uncle Cleosophus Stories, Retold

Intro: I just received a copy of Gary Taxali’s wonderful new children’s book, This is Silly! Gary is an illustrator and writer in Toronto–and my nephew. I posted a note on Facebook to congratulate him. I reminisced about the amazing artistic ability he demonstrated as a kid of seven when he illustrated one of the stories I used to tell about an imaginary character named Uncle Cleosophus. That sparked a conversation among the cousins about the stories, and I promised to share with you, not the stories themselves, but a story I’ve been performing in recent years about the telling of the stories. Enjoy.

Uncle Cleosophus Stories, Retold

Listening to the story

When my sons were young, I liked to tell them stories. Now that they have children of their own, I like to tell stories to my grandchildren. But as all of you know who have told stories to little ones you love, it’s an enterprise fraught with difficulties.

It’s almost her bedtime when my granddaughter Riley asks, “Grammie, Tell us a story, an Uncle Cleosophus story. Tell us the same story you told last night.”

And her little sister, Alix Lily, chimes in: “Yes, tell us exactly the same story you told last night.”

Their father, my son, shoots me a warning glance. “Mom, can you keep it short? The girls gotta get to sleep early if we’re going to the track for the buffet breakfast.”

My granddaughters have been chattering all day to their cousins, Alexa and Gabriela, who are also visiting: “We always wave when the horses go by. Sometimes the riders wave back. Girl riders are the best. I might be a rider when I grow up. Once I touched a real live racehorse on its nose.”

I nod to acknowledge my son’s concerns, and soon I’m sitting in front of four little girls curled up on the inflatable bed in the basement play room, waiting for a story. Not from my repertoire of fairy tales, but a made-up on-the-spot story like I used to tell my sons and their cousins years ago. I don’t flatter myself about the reason for the appeal of these stories: it’s not the fabulous setting, characters, or plot. The children listening are always super heroes in the story. It’s a can’t fail formula.

The girls fire off suggestions. “Make it exactly the same, but make the ending different. And this time, ALL of us want ALL of the super powers!”

Years ago, each child had only one super power.  I hesitate. But if it pleases them…why not?

Alexa, who is only three, solemnly pushes her nose to make sure her imaginary wings still pop out properly.

“And remember,” says Riley. I want to be able to fly too. But I don’t want wings. I fly like Superman.” She shows me how she flies with her arms pinned to her sides. I think her arms should be outstretched, but she’s not convinced. Alix Lily wants wings like her cousin Alexa. But Gabriela is undecided. Does she want wings? Does she want to fly like Superman? Or does she want jets in the back of her feet so she can fly standing up? We talk about the advantages and disadvantages of wings. For one thing, it’s easier to hold the bad guys. And wings are beautiful. Especially if they’re pink and sparkly. But wings tend to bump into things—and that can hurt.

I begin the story…

One night, Riley and Alix Lily and their cousins Gabriela and Alexa are all together visiting Grammie Margaret and Grandpa Jay. Suddenly, just at bedtime, the phone rings. It’s Uncle Cleosophus, and he wants to speak to Riley.
“I have a problem, and I need your help,” he says. “Can you and Alix Lily and your cousins come right away to Philadelphia?”

Gabriela adds: “Don’t forget the part where Grandpa says, ‘Who’s Uncle Cleosophus?’”

And the four of them dissolve in giggles over this apparently hilarious part of the story.
I continue…

Riley makes peanut butter and marshmallow fluff sandwiches for everyone to take on the trip, except for Alix Lily, who doesn’t like peanut butter. She makes fluff sandwiches for her.

Gabriela speaks up: “We don’t want peanut butter either. Can we have jam?”

Alexa says, “I only like grape jam and blueberry jam.”

I promise, “OK, Riley will make you grape jam sandwiches.” They talk about sandwiches for awhile.
I try to move the story along.

Uncle Cleosophus meets the girls at the airport and drives them to his octagonal house where they go straight away to the spiral staircase that leads to the tower in the middle of the house where they do all their super thinking.

Riley asks, “Why do we always go to the room in the tower?”

“Well”, I reply.” “It’s cozy, and, besides [I’m trying to come up with something plausible] that’s where you all get your magical powers.”

Alix Lily looks at me, shocked. This specific detail will require a digression of several minutes. I had never mentioned before that they didn’t have their magical powers all the time. It seems all wrong to her. And unnecessary. And let’s change that part.

I tell them I’ll consider it.

Uncle Cleosophus explains the problem: Zoomhilda, the fastest racehorse in Philadelphia and probably in the world, the horse that seems to fly around the track, has disappeared. And so has her jockey, Annabelle Jones, the best jockey in the world.

Alix Lily has some important suggestions: “Let’s change the story. This time Zoomhilda doesn’t go to rescue her sister, Jazzyhilda. This time she gets captured by a bad guy and gets locked up in a secret place and we have to rescue her.”

Gabriela says, “But can we still go to the magic island with all the candy cane trees and marshmallow flowers and the unicorns?”

I promise not to forget about the Island—when we get to that part of the story. Somebody, Riley I think, adds, “the mud holes could be chocolate pudding!” They all like that idea.

“But we could have healthy food too, like broccoli trees,” I suggest. I’m trying to be a forward-thinking, healthy-food-conscious grandmother.

“Grammie, nobody wants broccoli trees!”

Little Alexa earnestly asks, “Can we have calamari? And olives?”

Who would believe a three year old wants olives in her stories? Now, so far, all we’ve got done is the standard Uncle Cleosophus opening and negotiated a few details. I’m losing track of this story, and I worry that I need to pick up the pace if I’m going to have them asleep before midnight.

“Anyway,” I continue. “That night, Mr. Bad Walter Guy returns to the racetrack…”

“Grammie,” says Riley. “Don’t you remember?  His name isn’t Mr. Bad Walter Guy. It’s just Bad Walter Guy!”

How silly of me to presume to change one word of this gem of a story.

Alexa and Alix Lily practice jumping on the bed. They wonder if it would be helpful if they act out the story for me so I won’t forget so much. Riley and Gabriela, older and far more mature, think they are being silly. But a little jumping and blanket flinging would be ok.

“Don’t stop telling the story. We’re all listening,” Riley adds as she piles up pillows and blankets on one end of the bed to make a softer landing place.

Time passes. As I recall, my son comes downstairs to remind me that the girls will be cranky the next day if they don’t get any sleep. He listens for awhile. Much later, when I go upstairs, he takes me aside and says to me gently:

“Mom, it might be hard for them to fall asleep while you tell the story if they’re jumping on the bed.”

He has a point there.

“And,” he pauses while he considers how best to tell me that he’s concerned about the breakdown in traditions. “They’re not allowed to change the story. That’s not the way the Uncle Cleosophus stories work.” He frowns a little, “Should I have a talk with them? I can tell them for you: They are only allowed one super power each!”

Ah, I’ve become soft, and the stories will never be the same. Nevertheless, I’d like to think the Uncle Cleosophus traditions endure–in a fashion. In any case, as I recall, there was always quite a bit of jumping on the bed, even in the good old days. And my sons turned out well, despite me.

There is a postscript to this story. My son sent an email to his brothers.

My oldest son shot a note to me within the hour. “Mom, you can’t be so soft. Stick to your guns. Definitely do not allow this variation! Only one super power per kid. And what’s with this business of acquiring super powers in the tower room? That’s never been part of the story. On that , I side with Alix Lily. But only on that.”

Breakfast at the track.

Before the day was over, I heard from my youngest. He sided with his brothers.

Copyright August 22, 2005, by Margaret French