Posts Tagged ‘communication’
The Power of the Dedicated Listener
I missed my mother and I missed being around people who have Alzheimer’s. So I volunteered to visit people living in a memory care unit.
Donna greeted me warmly. She wore a man’s plaid shirt, black sweat pants and worn tennis shoes. She was lean and restless, her hands a nest one moment and a flying bird the next.
“She likes to talk,” was all the staff told me.
She noticed my orange shirt and I told her it was seersucker.
“Yes, he had a suit,” she said. Her gaze was earnest and her words seemed urgent. Listening to her was an archaeological experience: hills of dust and sand with an occasional gem of a multi-syllable word.
“I knew they needed to triangulate,” she told me. “But then the 466 of them fell into the 375.”
She looked into my eyes as she spoke and I tried to intuit what she was telling me.
The aide who introduced me hadn’t known anything about Donna’s background and I wondered if she’d been an accountant, manager, or entrepreneur.
“How did you feel about that triangulation?” I asked.
“Not good.”
”Tell me more about that.”
She offered a stream of eroded words, with major letters worn away.
As we talked, I felt I was dog paddling through rough seas, clinging onto whole words and struggling to understand her. But maybe I was trying too hard.
At the end of her time together, she smiled.
“Good,” she said. “This was good.”
Maybe it was enough for her to talk and have a dedicated listener.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Finding Comfort Where You Can
When I was in the throes of sadness following my divorce, my 12-year-old daughter came into my room and handed me a stuffed bear.
“This will help you,” she said.
At first, I had my doubts about the healing power of inanimate objects. But I soon learned that cuddling a soft bear was a calming and healing experience.
My mother created her own soothing experience when she was deep into Alzheimer’s. Here’s an excerpt from this story, from my book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
A Doll of Her Own
That afternoon, while my mother is walking down the left-hand side of the corridor in the Alzheimer’s unit, tapping one hand on the handrail, and pressing the other palm on her forehead, she sees a baby doll lying on the floor. Mom’s adult diaper rustles as she bends down, picks the baby up, smoothes its curly hair and carries it with her to the dining room. There she settles in a chair and rocks the baby, talking and singing to it.
“Your mom’s fallen in love with a baby doll,” Leticia, the nurse aide, says when I visit.
Mom is sitting at the table in the small dining room, her head bent over, as if she’s fallen asleep on a long journey. I touch her shoulder once, twice and on the third time, she straightens, notices me and smiles.
I sit beside her and spread out some photographs. She is staring vacantly at a photo of her granddaughters when Leticia brings over the baby doll.
“Here you go, Frances,” Leticia says.
Mom lights up, holds out her arms and says, “You’re cute. You’re so pretty. You’re a good boy. You’re a good girl.”
I look on in amazement. I haven’t seen Mom so animated in weeks. Yet I feel a pang: I had yearned to be the one who jolted her into vivacity.
I listen as Mom continues her conversation with the baby. Maybe the ease of having someone who doesn’t talk back, who doesn’t hope you will complete a sentence, who doesn’t care if the words are missing or not right, maybe that freedom lets Mom flow with her speech.
I decide to buy my mother her own baby doll.
At the toy store, the dolls are all full of activities. One laughs when you press her belly. One has a musical bottle. Another takes your picture …
I search the aisles for a quiet doll without too many accomplishments. Finally I find a soft, rosy-cheeked baby, a good size to cradle, who boasts only an open mouth for a pacifier or bottle.
“Some little girl is going to really enjoy this doll,” the cashier says as I pay.
I smile as I envision that 87-year-old little girl who is my mother.
Mom sits in a chair in the TV room, eating strawberry ice cream out of a round cardboard container. I know better than to compete with dessert, so I wait until she has finished the last smidgen.
Then I put my hand on her shoulder. She looks at me, her eyes vacant.
“Hi, Mom,” I say. She stares at me and then she sees the baby doll.
“You’re here,” she says, her eyes widening. “My little girl is here.”
She holds out her arms and I hand her the baby.
“Bo bo bupe, tootle ootle, oop. I have my little girl,” she croons.
She smiles at me; she smiles at the doll. Does she know I’m her real little girl or is she imagining the doll as her child? At this moment, as I watch my mother come to life and praise her baby, it simply doesn’t matter.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Turning Remembering into Caring
“I am sitting here now as you doze, not in case you remember me, but because I remember you.” Sitting with Grandma by Gail Rixen, from the book Beloved on the Earth: 150 Poems of Grief and Gratitude
So many times I sat with my mom in the activity room of the Memory Care Unit, sharing stories of my life. I gazed at her but no longer hoped she would look at me or pay strict attention to my what I was saying. I simply let the flow of words, the depth of our share history and the steadiness of my love for her connect us.
Recently, I was touched by this post written by Michelle Remold in Lori La Bey’s fascinating blog, Alzheimer’s Speaks. Michelle’s story offers another look at the beauty of using remembrances of a shared history as a way to connect.
“We would visit my grandpa every weekend. Even when he slept, we would spend at least an hour sitting with him and would reminisce about things he used to do with us. We would even send him postcards when we went on trips, not so that he would remember us, but to show that we were thinking about him.
I didn’t go visit him in hopes that he would remember me, but instead because I remembered him and visiting was a way to be with him and to relive the moments and create new memories. Even when he no longer knew who I was, I would run to him, take his hand and we would walk together. Even as I got older, whenever I would talk to him, he would smile. I would sit with him and tell him about my week and everything that was going on. There is no doubt in my mind that deep down he knew me although I never was hopeful he would remember my name. I remembered him in a way that would never be replaced.”
“We do not remember days; we remember moments.” ~Cesare Pavese, The Burning Brand
To learn more about Alzheimer’s Speaks, please visit: http://alzheimersspeaks.wordpress.com/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Eight Ways to Spark Up Communications with a Person Who has Dementia
Some days when I visited, I tried everything to get Mom’s attention and communicate with her. Of course, I tried talking. When that didn’t interest her, I gazed into her eyes or waved my hands to pique her curiosity or touched her arm to let her know I was there. I know how challenging it can be to have meaningful communication when someone is deeply forgetful and I am most grateful for this excellent article by Karen Love. Karen is a founder of CCAL, a non-profit national consumer advocacy and education organization.
Here are excerpts from Karen’s article:
Did you know that spoken words only account for 7% of communication? The remaining 93% of communication is conveyed through body language, vocal tone and pitch. Communication style becomes especially important when someone in your life is living with dementia.
Here are a few tips for better communications:
Stand at eye level in front of them so they benefit from seeing your body language and facial expressions. Slow your speech down because their brains process information more slowly.
Don’t interrupt: take time to listen to the person’s response. If they are especially stuck on a word, kindly supply the word and see how they react. If they don’t appear to want the help, let them manage on their own.
Ask one question at a time and ask questions that require simple yes or no answers. For instance, “Do you want scrambled or fried eggs this morning?” instead of “How would you like your eggs this morning?”
Where possible, supplement your communication with visual cues. Smile often, not only because it conveys warmth and caring, but also because smiling can make you feel better too.
Touch is a powerful communicator. When used positively, touch can convey caring and warm feelings. It only takes a moment to offer a pat on the shoulder or a gentle hand squeeze.
Phone calls are especially challenging for someone who has dementia because the only communication cues they receive are words (7%) and vocal tone and pitch (38%). Limit phone conversations to a minute or so and say something positive like, “I was thinking of you and just wanted to call and say hello.” Consider using Skype or another one of the visual software methods on a computer, tablet or iPad to communicate.
Spend time together in companionable silence. It can be exhausting for someone living with dementia to continually process communication. Sit across from the person or at 90 degrees so they can easily see you.
Lastly, be aware of how you are communicating and whether it is having desirable results such as smiles, nodding, and looking contented, happy, or relaxed. If not, review your style to see if you should adjust an aspect of your technique.
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To learn more about Karen and her organization, please visit: http://www.ccal.org
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Staying Connected When a Friend Has Early Onset Dementia
It’s been two years since I’ve seen my friend who has early onset Alzheimer’s. When I learn she’s coming to town, I’m both excited and nervous: excited to see this charismatic, interesting and brilliant woman and nervous about communicating. Though she’s functioning very well, she’s told me her directional, reading and math skills have been impacted by the disease. How will her dementia affect our conversation?
We meet at a restaurant, hug, exchange a few pleasantries, and order our meals.
Then we look at each other. My brain is racing: what shall I say? How shall I start?
Finally, I pose the same questions I might ask any friend: “What is bringing you joy these days?’
She answers, eyes shining, telling me about her beloved husband, her stalwart friends, her garden and her meditation practice.
Then she tells me again about her meditation practice.
“I forget things sometimes, so don’t worry if I say the same thing twice,” she says.
My shoulders relax. I appreciate the honest and easy way she’s brought up the subject of dementia. Now I can ask, “What are you learning from your experiences?” Patience, acceptance, surrender, she says. By sharing the details, she’s helping me understand some of what she’s going through and allowing me to be a better and more compassionate friend.
Listen from Your Heart
Mary Cail, PhD, author of Alzheimer’s: A Crash Course for Friends and Relatives, offers this simple equation for compassionate communication during a visit:
- State the reality: I can’t imagine what it’s like to…
- Describe the situation: be in early dementia, etc.
- Say what you would like to do: I wish I knew what to say.
- Say what you can do: I can listen.
Then be quiet. As you listen, you’ll become more adept at knowing what to say. Chances are, just listening is enough.
Create Connection by Sharing and Listening
As you plan your visit, think about what your friend might need or want. Here are some additional ideas:
Bring something to share or to talk about. Sometimes reading a poem, story, newspaper article, depending on your friend’s interests, helps ease you into deeper conversation.
One man always brings a special rum cake and a Salsa CD for his friend: she’s in a care facility and often wants to dance. Another brings photos from their earlier adventures together. Another brings a grab bag with fun games, books, magazines and treats.
Bring a mutual friend with you. That widens the conversational possibilities.
Reach Out to Your Friend
Charlie and his wife Elizabeth have always had a wide circle of friends and Charlie’s diagnosis of Alzheimer’s has not changed that. Here are some tips:
“The person with Alzheimer’s may not be able to initiate a get together,” Elizabeth says. She always appreciates it when Charlie’s friends call him. Early on, Elizabeth helped Charlie stay in touch with a call sheet that listed Charlie’s closest friends and their phone numbers.
Honor the relationship and Plan Your Visit
Many of Charlie’s friends are life-long. These friends always call Charlie first to plan a visit. Sometimes Charlie will say, “Better check with Elizabeth; she keeps the calendar.”
Other times, the friend will later check with Elizabeth and make sure she knows about the plan, as Charlie has a tendency to forget details.
Learn from the Spiritual Journey
Elizabeth helps Charlie with his social calendar and Charlie helps Elizabeth with her spiritual practice. “Charlie journals daily on acceptance and gratitude. He practices being grateful for the small things in life,” Elizabeth says. “I’ve learned a lot from him.”
………….
Mary’s book and blog:
Alzheimer’s: A Crash Course for Friends and Relatives
The All-Weather Friend Blog
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Six Tips for Surviving the Holiday Season When a Loved One Has Dementia
Normally, Thanksgiving was my favorite holiday, a time our family gathered together at my Kansas City home. But that November, my stomach clenched at the thought of our traditional Thursday evening meal.
My mother had Alzheimer’s and the holiday would be different. I felt alone but of course I wasn’t: there were 15 million family/friend caregivers helping the five million Americans who have dementia.
I’d been through my initial storm of denial and grief. I felt I’d been coping well with Mom’s diagnosis, focusing on offering my father extra support and trying to flow with Mom’s now spotty memory and personality quirks. But a pre-season sadness invaded me in October and I found myself dreading the alleged festivities. How could we have our usual holiday dinner, take our after dinner walks, play Scrabble and Hearts and Charades without Mom’s participation? How could we enjoy going to movies and plays when Mom was having trouble focusing and sitting still? And how would Mom react to the situation: would she feel uncomfortable and out of place? Would Dad feel protective and anxious? And more important, what would we have for dessert! Mom was legendary for her chocolate and butterscotch brownies, date crumbs, and bourbon balls. No store-bought cookies would compare.
As I stewed over the prospect of a depressing Thanksgiving weekend, I remembered the vows I had made: I had promised I would try to stay connected to Mom throughout her Alzheimer’s journey. And I had promised to see the gifts and blessings and fun in the experience.
So I began thinking: if the holiday is going to be different, why not concentrate on making it different in a creative and connective way? Here are some ideas I used to make the holiday work for me.
- Acknowledge my feelings of loss and grief. I wrote them down and shared them with a few friends. Just expressing myself made me feel stronger.
- List what I would miss most during the holiday season. My list included cooking with Mom, eating her brownies and rum balls. I asked my brother, who’s a terrific baker, to make some of our favorite sweets and I set up a place in the dining room where Mom could sit next to me while I chopped mushrooms and peeled potatoes.
- Create an activity to give our holiday a new focus. We created a simple holiday scrapbook called, “The Little Kitchen that Could,” complete with a family photo shoot and a playful script.
- Appreciate my blessings. We started our Thanksgiving meal by asking everyone to name one thing he or she was grateful for. I continued my gratitude practice throughout the holiday season, either alone or with others via telephone and social media.
- Take extra good care of myself. I treated yourself as I would a friend who’d suffered a deep loss.
- Set up a lifeline. “I’m worried about melting down,” I told my friend. She urged me to call anytime for encouragement and reassurance.
These six steps helped me enjoy my holiday and appreciate my mom just as she was. Our holiday was “different” but it was also wonderful.
*****
Q 4 U : How have you adapted your holiday expectations?
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Hearing the Real Meaning: The First and Last Words
Several years ago, Ron and I went to Italy. Every night, I sat up late, taking notes in my travel journal.
Five nights into our trip, Ron asked, “What are you writing? Are you describing the churches we saw today, are you waxing lyrical about the vineyards and fields?”
“No, I’m making a vocabulary list.”
You see, before we left on our trip, we took 12 Italian lessons. I was keeping a list of words I had spoken or understood. I wanted to find out how much each word cost and if our Italian lessons had been worth it. In five days I had only used 50 words—each word from my lips costs more than a bottle of mineral water and less than a glass of wine. I realized I had to be increasingly outgoing if I wanted to make the most of my Italian. 
People’s faces lit up when I tried speaking their language, even when I asked something simple, like, “Where is the bathroom?” One dark evening when we were hopelessly lost, we stopped at the only establishment that was open on the narrow winding road: a bar. I walked in and asked, “Where am I?” in Italian. That one awkward, existential sentence resulted in a kind couple offering to drive ahead of us and lead us to our hotel.
By the end of our trip, I had used or understood 200 words and I had connected with many people. The cost was measurable—the results were priceless. 
Just like my first words of a new language offered me rich connections, my mother’s last words were deeply meaningful. I wrote about this in my story, Words, to the Wise.
Mom is in bed when I visit one afternoon, her eyes open, her hands twisting the blanket, like a kid who’s had enough of her nap. She smiles when I walk in.
“Hi, Mom, how are you?” I certainly expect no direct response from Mom, but the greeting makes me feel normal.
“How are,” she says and I feel a little thrill at this social nicety.
“I’m fine, Mom. How are you?”
“I know what you mean,” she says, staring out towards the hallway.
I am excited by Mom’s pointillistic little monologue. Alzheimer’s has erased most of Mom’s considerable vocabulary and this spill of words is a treat. As I stroke her arm and smile at her, I realize I am literally listening to my mother’s last words.
In the movies, the last words are profound gems of wisdom, uttered upon a deathbed. Those words are a raft to hang on to so you don’t drown with grief. Though my mother is lying in bed, she is definitely not dying. In fact, given her vast years and advanced Alzheimer’s, she’s relatively physically healthy.
“Well we item” Mom says. “All right”
She no longer needs a listener’s approval. She no longer checks for understanding. The words spill out, like the random winnings from a nickel slot machine.
“So, but that’s,” Mom says, as I touch her leg.
“Why.”
“Oh.”
Each word is an independent contractor, a one-act play. Mom’s words require interpretation, involvement, imagination and curiosity. Unlike last words in a deathbed scene, Mom’s words do not neatly sum up her life or her philosophy. Still, these words are gifts. Many visits have gone by with the barest scraps of language. I get out my pen and paper and write down every one of my mother’s last words.
As I write, I imagine she is giving me a secret code, sending me a message from the last cognitive bastion of her brain. “I don’t know. I paid. I’ll try.” What depth, what meaning, what spiritual significance these simple phrases might have!
*****
Q 4 U
Are there times when a few words have made a big difference?
