Notebook: Angels

Editor’s note: “Angels” is an excerpt from a short story about family caregiving that I’m writing for my book, Rest. I began it this fall in Eson Kim‘s Fiction I class at GrubStreet Creative Writing Center in Boston. In this excerpt, we meet Arnold Davies, who is just waking up from surgery, and his wife Mim. — MAB

Chanson de la plus haute tour (II) by Airair, 2007.

EYES FLUTTERING OPEN, ARNOLD IS ON THE DIM EDGE OF FREAKING OUT.

On a Friday afternoon just before Christmas, Arnold wakes up from cardiac bypass surgery, gasping, in one of those high-tech hospital cribs with pushbutton-this and bellringing-that.

Eyes fluttering open, he’s on the dim edge of freaking out, which God knows is a perfectly reasonable response to waking up on a ventilator with a massive bandage on his chest, a tube down his nose, an IV in his hand, and a raging thirst. The first thing Arnold tries to do is swallow – a gulp of panic – but he can’t do it because of the ventilator tube in his throat.

Aagh, he thinks. Aagh! His mind generates the kind of dazed roar that precedes distinct thought. He’s in pain and he can’t swallow, can’t call out for help, and can’t even turn his head. There’s a whole lot of beeping going on. In his head he thinks something, perhaps Oh God, or Mim? Mim?

“Mr. Davies, I see you’re awake.” A woman with an angelic cloud of hair has appeared at his bedside. “You’re in cardiac surgery intensive care and you are doing just fine,” the angel says. “Your surgery is over.” Arnold blinks. The angel smiles a practiced smile.

“Mr. Davies, can you squeeze my hand?” asks the angel. “Good. Wiggle your toes? Terrific. Ok now, I want you to follow my finger with your eyes. Follow it back again. Good. Now, are you in pain? Nod if you’re in pain.”

Arnold nods. His left hand quivers and tries to raise itself, but it’s tied down. Tears escape Arnold’s eyes and slide down his cheeks; he’s mortified. His nose drips.

 Head of the Virgin in Three-Quarter View Facing Right by Leonardo da Vinci

“WE’RE GOING TO GIVE YOU SOMETHING FOR PAIN.”

“We’re going to give you something for pain,” the angel announces. There’s an indeterminate flurry of activity. Someone wipes his cheeks and blots the drips coming out of his nose. “You’re on a ventilator,” the angel says, “so you won’t be able to talk. You’re doing just fine.” Seconds later, he feels blessed relief steal past his ribs into the core of his being. He slips back into the deep.

In the ICU, time passes. Techs, nurses, docs, visitors, kitchen staff swirl down the hall past Arnold’s room. From time to time, someone disturbs his sleep.

Then: “Arnold, honey, it’s Mim.” Arnold stares up at her face, feels his wife’s hand stroking his hand. Briefly, her hair touches his neck.

Mim, he thinks. Tears slide out of his lids. Mim, I need a drink, he thinks. Her fingers wipe the tears down over the pale surface of his face. Her hand strokes the hair on his head, slides around to touch his cheek.

“Wounds heal from the inside out,” Dr. Binh said to Mim in the waiting room after surgery. “Absolutely at this moment, and at every moment since I made the first incision, your husband’s brain and tissues have been directing billions of cellular procedures aimed at stopping the bleeding and repairing the damage. These cellular repair procedures are programmed in us by DNA. All we need to do is breathe and wait, or, in Arnold’s case, allow the ventilator to breathe. Just be in the moment.”

In this moment, Arnold weighs the pressure of his body on the bed; Mim’s hand on his; electronic sounds; the wedged feeling in his throat. A slow-moving awareness begins to reduce the roar in his head.

Head of a Negro by Peter Paul Rubens

“BREATHE DEEPLY, ARNOLD,” THE NURSE SAYS.

New angel: a man with dark hands and fingers, a Caribbean voice.

“Arnold,” the nurse tells him, “we’re going to remove your ventilator tube and give you a try at breathing on your own.” It feels like somebody’s pulling a hose out of his throat, fast.

“Breathe deeply, Arnold,” the nurse says. “That’s right, breathe in and then breathe out again.” The machines change their pattern of beeps. Arnold breathes. His throat burns when he swallows but it feels so good to be able to swallow, even though the thirst consumes him. Someone feeds him ice chips; a blessing.

Now that the breathing tube is out, Mim has been allowed back into Arnold’s room. She sets her carryall bag on the floor and sighs down into the chair, twitching her thin yellow infection control gown over her clothes. Her hands smell of disinfectant gel.

Woman Embroidering by August Macke, German, 1909.

DEAR ARNOLD, MIM THINKS, DO YOU REMEMBER THAT SONG ON THE RADIO WHEN WE MET?

Dear Arnold, Mim thinks, Do you remember that song on the radio when we met? She remembers their wedding ceremony at her grandmother’s church in Chicago, her triumphant smile as she processed down the aisle towards Arnold on a gust of bridal pride.

“Can I have some water?” Arnold has wakened.

“Let’s sit you up,” says the nurse. “Hold this to your chest.” He hands Arnold a heart-shaped cough pillow and presses buttons. The head of the bed raises a tad. Oh, God! Something clotted surges downward in Arnold’s chest.

“You’re ok, Arnold,” the nurse tells him. “It’s ok, your chest tube will get rid of the fluids. You’re safe.” He turns to Mim: “You can give him ice chips, but just a couple at a time.”

“Of course,” says Mim. She finds herself breathing in unison with Arnold, as if they’re engaged in some joint venture that requires the highest levels of corporeal coordination. Hearts and lungs have never felt more precious, nor angels’ voices nearer.

— Mary Ann Barton

Image credits (from the top): Chanson de la plus haute tour (II) by Airair, 2007, via Wikimedia. * Head of the Virgin in Three-Quarter View Facing Right by Leonardo da Vinci, Italian, 1508-1512, via Metropolitan Museum of Art, Harris Brisbane Dick Fund, 1951 (51.90). Head of a Negro by Peter Paul Rubens, Flemish, ca. 1620, via Wikimedia. * Woman Embroidering by August Macke, German, 1909, via Wikimedia.

Cool Tools: The Steal Like an Artist Journal

The Steal Like an Artist Journal by Austin CleonJoyous Paradox readers know that two of my favorite tools for caregiver wellbeing are creative self-expression and comic relief. Writer Austin Kleon’s new Steal Like an Artist Journal: A Notebook for Creative Kleptomaniacs offers us ample room for both. This graphical playground-in-a-book is packed with prompts for comic as well as serious journal entries. Take it with you and write, sketch, doodle, improvise away!

Today, I’m sharing a pair of entries from my journal with you. My choice of theme: cats vs. dogs. Which tip jars would get your money if you saw them on your favorite coffee shop’s counter? Check out Instagram for more #stealjournal photos.

Barista Tip Jar Page

Steal Like an Artist Journal Tip Jar Page

Barista Tip Jar page from Austin Kleon’s Steal Like an Artist Journal. Today’s theme: cats vs. dogs.

Tip Jar Sketch Page

Tip Jar Heart #1 by Mary Ann Barton

Mary Ann’s Tip Jar Sketch Page offers an expanded version of her Barista Tip Jar page from Austin Kleon’s Steal Like an Artist Journal. What gets your heartfelt vote? Cats, dogs, gerbils, or budgies?

 

 

Washing His Bright Hands (I’ll Fly Away)

Study of Hands by Egon Schiele

Study of Hands by Egon Schiele, Austrian, 1921, via Wikimedia Commons.

Mmm, hmm. Mmm, hmm. Song’s in my breath this morning, dear heart. “Some bright morning, when this life is over, I’ll fly away.”

Here’s the basin, dear heart; here’s the soap, the towels. “To that home on God’s celestial shore, I’ll fly away.”

So, dear heart, let me take your hand. You wake? Morning time, sir. Your eyes open; good. You sleep okay? Good, good. You remember me? Mary Ann? Right, I’m your aide, here to get you up for breakfast. You hungry? Get you some coffee soon, black and hot like you like it. First wash up a bit. Freshen up, start the day out right.

Ah, this man’s bright hands. When I hold his right hand, his skin is translucent. I see through it like cellophane over one of those hollow decorated eggs. You peer inside at frost flowers, you see blue veins; you see tendons flex and stretch, bones lift and bend and twist. Each joint, a full knot, moves slippery in my hand, soapy lavender smell washing away that night-bloom sweat. Flesh at the curved edge of his palm like putty rolled between silk.

When you get to this age, all human hands come down to this: bone under silk, my hands in blue vinyl gloves holding and turning his hands, passing the washcloth over the skin like polishing silver for Thanksgiving table. Silver and mica and blue and bone. Body heat. Lavender. My eyes fall over his hands, his eyes, his winged and naked shoulder. Silence; his ragged breath; the ringing in my ears as of distant and unearthly bells.

“I’ll fly away, oh glory, I’ll fly away (in the morning). When I die, hallelujah by and by, I’ll fly away.”

— Mary Ann Barton

The song is I’ll Fly Away (O Brother, Where Art Thou? Soundtrack) by Gillian Welch and Alison Krauss. The date is September 11.

Dementia Talk #3: Walks

Map of Charity Walks and Races 2015

Editor’s note: “As long as you’re breathing, it’s never too late to do some good,” said poet Maya Angelou, an eloquent supporter of research to end Alzheimer’s and related dementias. If you’re in the U.S. this fall, why not step out in one of the Alzheimer’s Association’s famous Walks to End Alzheimer’s, or a related event aimed at relief for ALS (Lou Gehrig’s disease)? Click on the map below to register for a walk or race near you. As Angelou pointed out, African-Americans are twice as likely to develop dementia. In honor of all my friends living with this condition, come step on out. — MAB

Charity Walks for Dementia and ALS Relief, 2015

Charity Walks for Dementia and ALS Relief, 2015. Click on this map to go to an interactive map of walks and races to raise money for research on Alzheimer’s disease, other dementias, ALS, and blindness. Source: Griswold Home Care.

Dementia Talk #2: Props

How can we bring lightness and pleasure to our interactions with people with dementia? I like to use props, which can be any durable object suitable for show-and-tell.

Introducing a new object to a person living with dementia can spark their attention and stimulate curiosity. If the item means something special to you, that can help, too, since it will bring greater emotional depth to your encounter.

Here are three examples of items I like to bring with me when I visit someone with Alzheimer’s disease or another condition affecting memory or thinking.

The Octaband®

An Octaband® is a colorful fabric exercise tool to play with, indoors and out. The inexpensive, stretchy device comes in small (8-arm) and large (16-arm) sizes. When you play one-on-one with a partner, you position yourselves on opposite sides of the center circle and hold a colorful arm of the Octaband in each hand. The extra arms wave in the breeze — somewhat like flying a kite.

Octaband.com

The Octaband® is a colorful, stretchy, fabric exercise device developed by dance/movement therapist Donna Newman-Bluestein, DMT-BC, LMHC. It can be used in pairs or in a group. Photo from Octaband® LLC.

Octaband.com

Anyone can enjoy using an Octaband®. The silky fabric loops around the wrist, feels good in the hand, and encourages rhythmic stretching. Try it with music or sing as you play. Photo from Octaband® LLC.

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Hometown Photographs

When I get to know someone with dementia, I like to bring photos of the town where they grew up. Is it easier to recognize buildings than faces? I don’t know, but I’ve had some lovely chats with clients who remember going to the movies at the theater on Main Street or hearing summer concerts at the gazebo in the park. I download photos from the Internet to my smartphone or a tablet for easy sharing, but you could also have a copy shop print and laminate them.

Goodman Library, Napa, CA

The Goodman Library was my favorite building as a child in Napa, CA. It’s now the county historical society and on the National Register of Historic Places. Photo from NoeHill Travels in California.

Goodman Library in 1938, Napa, CA.

The Goodman Library in 1938. Napa County Historical Society photo from the Napa Valley Register.

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Lap Labyrinth

The labyrinth is an ancient design experiencing renewed popularity today as a platform for stress reduction. A lap labyrinth is a wonderful, portable alternative to the patio-sized or larger labyrinth for walking meditation. I coach my clients to hold the breathe as they move their fingers slowly along the grooves of the device, tracing the curves back and forth until the center is reached and then coming back out to the edge again. I support people in going at a faster pace if that seems more natural. It’s also fine to skip from one groove to another. Any path can bring this unusual object to life for a curious explorer.

A Pine Lap Labyrinth from Stress Resources.

Holistic nurse Pamela Katz Ressler, RN, MS, HN-BC, offers handcrafted pine labyrinths at Stress Resources. The lap labyrinth, also called a finger labyrinth, is a portable device used for stress reduction or meditation. Simply trace the grooves with your finger as you breathe gently. Notice the subtle sensations of touch, texture, pressure, movement, light, color, shadow, and even sound. Photo from Stress Resources, Concord, MA.

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What’s Your Experience with Props?

Do you use props as you interact with the person with dementia in your life? What works best: something familiar, or something new? How has this changed over time? Feel free to share your experience in the comments below. Or write me at mabartonst [at] gmail [dot] com. — MAB, August 9, 2015

PS: I offer examples of specific products based on my success in using them in my professional work with home-care clients. I am not not receiving any compensation for mentioning them.

Related: The first post in this series is Dementia Talk, already the top post in Joyous Paradox for 2015.

 

 

Dementia Talk

Editor’s note: What’s the most popular post on Joyous Paradox, my elder-care blog? How to Say Hello to Someone with Alzheimer’s Disease ranks way at the top. As a professional caregiver, I’ve had the privilege of working with many folks with dementia over the years. I learn more about the nuances of human communication with every encounter. In the coming months, I’ll be sharing tips for strengthening our bonds with those affected by memory disorders. Let’s begin the conversation with a superb overview of dementia communication strategies from England’s National Health Service. — MAB

Communicating with people with dementia

Grandmother and Grandchild by Lovis Corinth, German, 1919

Grandmother and Grandchild by Lovis Corinth, German, 1919, via Wikimedia Commons.

Dementia is a progressive illness that, over time, will affect a person’s ability to remember and understand basic everyday facts, such as names, dates and places.

Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason clearly will change.

If you are looking after a person with dementia, you may find that as the illness progresses you’ll have to start discussions to get the person to make conversation. This is common. Their ability to process information gets progressively weaker and their responses can become delayed.

Encouraging someone with dementia to communicate

Try to start conversations with the person you’re looking after, especially if you notice that they’re starting fewer conversations themselves. Ways to encourage communication include:

  • speaking clearly and slowly, using short sentences
  • making eye contact with the person when they’re talking, asking questions or having other conversations
  • giving them time to respond, because they may feel pressured if you try to speed up their answers
  • encouraging them to join in conversations with others, where possible
  • letting them speak for themselves during discussions about their welfare or health issues, as they may not speak up for themselves in other situations
  • trying not patronise them, or ridiculing what they say
  • acknowledging what they have said, even if they don’t answer your question, or what they say seems out of context – show that you’ve heard them and encourage them to say more about their answer
  • giving them simple choices – avoid creating complicated choices for them
  • using other ways to communicate – such as rephrasing questions because they can’t answer in the way they used to

The Alzheimer’s Society has several information sheets that can help, including ones on the progression of dementia and communicating.

Communicating through body language and physical contact

Communication isn’t just talking. Gestures, movement and facial expressions can all convey meaning or help you get a message across. Body language and physical contact become significant when speech is difficult for a person with dementia.

Communicating when someone has difficulty speaking or understanding can be made easier by:

  • being patient and remaining calm, which can help the person communicate more easily
  • keeping your tone of voice positive and friendly, where possible
  • talking to them at a respectful distance to avoid intimidating them – being at the same level or lower than they are – for example, if they are sitting – can also help
  • patting or holding the person’s hand while talking to them can reassure them and make you feel closer – watch their body language and listen to what they say to see whether they’re comfortable with you doing this

It’s important that you encourage the person to communicate what they want, however they can. Remember, we all find it frustrating when we can’t communicate effectively, or are misunderstood.

Listening to and understanding someone with dementia

Communication is a two-way process. As a carer of someone with dementia, you will probably have to learn to “listen” more carefully.

You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking. The following tips may improve communication between you and the person you’re caring for.

Active listening

When communicating with someone with dementia, “active listening” skills can help. These include:

  • using eye contact to look at the person, and encouraging them to look at you when either of you are talking
  • trying not to interrupt them, even if you think you know what they’re saying
  • stopping what you’re doing so you can give the person your full attention while they speak
  • minimising distractions that may get in the way of communication, such as the television or the radio playing too loudly, but always check if it’s OK to do so
  • repeating what you heard back to the person and asking if it’s accurate, or asking them to repeat what they said
  • “listening” in a different way – shaking your head, turning away or murmuring are alternative ways of saying no or expressing disapproval

This article contains public sector information licensed under the Open Government Licence v3.0

Portrait of a Lady as the Magdalen by Master of the Female Half-Lengths

Dear Emma: Snappy Letters to My Alter Ego

Portrait of a Lady as the Magdalen by Master of the Female Half-LengthsEditor’s note: From time to time I share my writing process with readers of the Joyous Paradox blog. Today’s post is about my literary character Emma Davies, who began showing up in my notebook when my son Edward was in elementary school. (He’s now 35.)

“Who are you, Emma Davies?” I asked her, when her name first slipped into my consciousness all those years ago. “Why do you feel so familiar?”

Back then, all I could see of Emma’s life was the title of a story, “Emma Visits the Wise Woman.” It’s a story I hope to write one day. In the meantime, I often write to Emma in my notebook. Here’s a recent sample, edited and extended for clarity. Hope you like it. — Mary Ann Barton

Girl Writing by Franz NölkenSunday, June 7, 2015

Dear Emma,

It’s crowded and noisy here in the First Parish parlor. Small boys bounce up and down on the antique sofa. They hop off and drop to the oriental rug on the floor.

“Let’s say goodbye to Nana,” says a mother to her son.

“Bye, Nana,” the little boy mumbles.

“Nana can’t hear you,” his mother says. “It’s very loud in here.”

“Nana!” he yells, tugging his grandmother’s sleeve. “Goodbye, Nana!”

I’m writing this letter to you while I wait for Steve to finish chatting with the ministerial intern. I’d like to go somewhere quiet and write my author bio to share with Susan and Stephanie when we meet at Dumpling Daughter tomorrow to talk about book marketing.

Essayist Mary Ann Barton has taken full advantage of the opportunities life offers for failure and rebirth. Working as a rare coin dealer, arts agency desk-jockey, lobbyist, textbook proofreader, and library fundraiser, she found her niche in her fifties as a certified nursing assistant and companion to elders. Her work in progress, a trilogy of self-help books called Rest, Renewal, and Repose, will help family caregivers of all ages get back to sleep when worrying about a loved one who is very old, very young, or facing serious illness. She blogs about caring for ourselves as we care for others at JoyousParadox.com.

Portrait of Lola Braz by Zinaida SerebriakovaHere’s what I write about, Emma: How we live with others. How we live with ourselves. I’m writing a peach of a book for family caregivers. I want you to pick up Rest in the middle of the night when your old dad or your tiny child is safe in bed. Find tips and techniques for caring for your body, mind, and soul. Read a poem about a garden, a grocery list, or a grandmother who plays the cello. Love a painting by Philippe Mercier. Write in your journal. Dance as you cook dinner. Stretch your arms wide with an Octaband.

Really, Emma, caring for a loved one can be full of surprises. As Facebook would say, it’s complicated.

For some of us, there’s so much accumulated hurt and resentment that the free flow of love and concern is jammed up behind a Hoover Dam of bad memories.

For some of us, love flows so freely that we can’t let ourselves even dip a toe in the reality that we might lose our dearest on earth.

Writing a Letter by Kusakabe KimbeiFor all of us, there are images, real or imagined. I look at the shifting family groups in the church parlor — women and men and grandparents and babies and five-year-olds and young girls who might be anything from ten to 17 — and see them as photographs in an album.

Maybe the photos have a matte finish like the slightly pebbled surface of an oldfashioned school portrait. Mrs. Ansell’s Second Grade. That First Vacation at Lake Sunapee.  The Balloon Flight in Southern France. Our Last Visit with Grandma Hyde.

Maybe one day I’ll see a photo or a painting, Emma, and know that this is your likeness. I can’t wait.

Love no matter what,

Mary Ann

Copy this text to tweet: Caring for a loved one can be full of surprises. As Facebook would say, it’s complicated.  #caregivers

Image credits: Portrait of a Lady as the Magdalen by Master of the Female Half-Lengths, Netherlands (fl. circa 1500–1530), via Wikimedia Commons. Girl Writing by Franz Nölken, German, 1916, via Wikimedia Commons. Portrait of Lola Braz by Zinaida Serebriakova, Russian, 1910, via Wikimedia Commons. Writing Letter by Kusakabe Kimbei, Japanese, before 1933, via Wikimedia Commons.