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
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.
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.
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.
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.
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.
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
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
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.
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.
Editor’s note: Canadian author Elinor Florence shares stories and pictures of life in World War II in her blog Wartime Wednesdays. Here is her fascinating photo story of Canada’s female parachute packers, reblogged by permission. I wonder how changing attitudes toward women’s roles in the 70 years since the war have affected the way we remember those who served. Have you talked about working women in wartime with your family? — MAB
Featured image (top): Parachute Riggers by Paraskeva Clark, Russian-born Canadian, 1947, via Canadian War Museum.
Cheers to the Chute Girls!
By Elinor Florence
Although the article was written by a woman, Corporal Muriel Ellis, she kept the tone light. Here’s an excerpt:
Editor’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
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.
Here’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.
For 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,
Copy this text to tweet: Caring for a loved one can be full of surprises. As Facebook would say, it’s complicated. http://wp.me/p20HD7-5CY #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.
Movement Modalities: Dance, Housework, Breathing
If dance is the poetry of motion, then writing about dance can be a way of entering our embodied experience more fully, the way a poet enters each word of the poem. With this in mind, we might take one step at a time, paying attention to one moment of mindful awareness after the other. The pace can be slow or rapid, reverent or careless; perhaps lighthearted; certainly watchful.
What do I mean by watchful? Simply that if you are dancing, you will open your mindful eyes and observe the contents of your conscious awareness from one breath to another as you turn your right toe out and step to the side. You will also feel the way the sacrum guides your hip to rotate the leg, while your thigh opens out, just slightly, as the spine turns. The breastbone lifts the ribs and your weight shifts into the step, with the music already flowing along with your body, carrying you into another place, another step, another rotation.
And within the ribs beats the heart, nestled in the cardiac notch of the left lung, and the heart throbs between and behind your two lungs, the lungs swell with the in-breath and yield with the out-breath.
And now, can we imagine how each in-breath draws some physical elements of the world into our bodies, while each out-breath pours some physical remnants of our bodies back out into the world?
What does it mean, I ask myself, that my body is the medium for an exchange of gases between myself and the threadbare hemlock tree in my back yard? What does it mean that my body, as I drive to work in my car with the windows down on a spring morning, serves to filter the air and give it back to nourish the trees that line the road?
“Dear trees,” I would pray out loud every morning. “Dear trees, help me to keep breathing all day, no matter how fearful I am.”
“Dear trees,” I would pray out loud every morning as I drove to my new job in publishing in suburban Boston, “dear trees, you are so beautiful. You there, you raise your branches over my head, your early buds swell at the tips in droplets of pea-green, of silky burgundy, you there, your trunks so solid, your roots deep and black-barked down in the dark, roomy soils near the river, dear trees, you are so beautiful. Help me to keep breathing all day today, no matter how fearful I am when I answer the phone.”
So simple, you might say, dear trees, it should be so simple for me to answer the phone in my cubicle, to say ‘Prentice Hall Social Studies, this is Mary Ann.’ So simple, but because I am so new, and because I don’t have the training to do my job, and because there doesn’t seem to be any system to bring me up to speed in order to complete my assignments, I am aware, as I observe my supervisor’s pursed lips and scrabble through the papers piled on my smooth, putty-colored work surface, that each day’s work is not enough work. Each answer I give to my colleagues’ questions is not a sufficient answer. Each breath I take is not enough breath.
Imagine the experiential anatomy of breathing when you work in a job you love.
Now, imagine that it is many years afterwards and I am in a job I love, for which I am profoundly qualified. Imagine the experiential anatomy of breathing when you work in a job you love, a job in which it matters that you are a kind person. Imagine the way the breath is the very embodiment of taking in kindness and giving out kindness, over and over again. Not a Mother-Teresa kindness; not something superhuman, but just an ordinary, clumsy, this-is-the-best-I-can-do kindness.
I have to breathe a lot in this job I love, as I care for elderly people in their houses, old houses full of memories and things. I breathe a lot and I’m sweaty. I have to squat and pick up dropped laundry from under the bed. I have to wash my hands in the sink in the laundry room and dry them on a terry cloth towel. But each breath is enough.
Imagine how my body dances as I fold the laundry and put it away, as I step to the right, bend, pull out the drawer, press the stack of soft turtlenecks into the drawer, shove the drawer closed, and turn and step to the left again. My limbs and spine loosen, my ribs expand and the lungs open and the heart beats faster, the breastbone shifts and flows with the spine, the tailbone rises and turns me first one way, then another.
Imagine that my ribs shelter the lungs and my breath feeds the blood and the ligaments draw the ribs together in a curtain of protection.
Now, imagine that you drive home from a job you love, the windows down in your car, the trees receiving your breath by the side of the road. Imagine that you learn about the experiential anatomy of breathing on the job. Imagine that you see, for the first time, the prodigies of flesh within us all.
And so, perhaps, dear ones who read and write and read again, you will experience the gifts of kindness, of life, of movement, of yielding, of letting go, of falling into bed, and breathing through the night, and drawing breath again, as you rise for a fresh love, a fresh day.
— Mary Ann Barton
Glossary for this post: “Experiential Anatomy,” writes dance/movement teacher Susan Bauer, “is a creative / humanistic approach using movement, touch, drawing, partner work, and creative writing to embody and personalize your learning. One’s experiences become the basis for understanding one’s physical body and movement potential.” I liked the clip below of famed teacher Bonnie Bainbridge Cohen demonstrating Initiating Movement from the Coccyx.
Painting credit: Ballerina by Robert le Madec, French, 1899, via Wikimedia Commons.
Link to this post: http://wp.me/p20HD7-5BK.
Another post in Movement Modalities: Nia Dance Poem
“How to Grieve with Challah Bread” struck me as a perfect expression of the complexities of family life. Grief and loss. Rituals and remembrances. New loaves braided and baked and broken at the table. All these are emblems and occasions of belonging to the tribes of our birth. — MAB
Originally posted on Eating With My Fingers:
My grandfather is dead: I do not know how to grieve. So I make bread.
In the Bible they call bread the staff of life (my grandfather might have liked this: he liked religion), but really it’s the staff of grief. And rage, and guilt. I do not know how to grieve. I am twenty-two: my grandparents had children young, and I thought they would all die old. Older. I do not know how to grieve. I do not know how to grieve my grandfather’s passing, because I barely knew my grandfather. I tried to tell someone “he was like this-” and I came up short: who was my grandfather?
He let me eat apple pie for breakfast. He was my father’s father. He was bald. He liked to garden. He was a teacher, and some kind of occasional preacher. He came from a village called something like Jacksondale, which…
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