We were delighted to spend time with the bright and curious sixth and seventh graders in Mary Silwance’s class at KC Academy. They had read the young adult novel Hour of the Bees, which features a poignant relationship between a pre-teen girl and her grandfather who is living with dementia, and they wanted to learn more. During our short time together, talking about dementia with teens, we discussed:
- How it might feel for people who are living with dementia
- Stigma and stereotypes
- Creativity and dementia
- Becoming an advocate
Here are a few excerpts from our lively conversation:
How many of you have ever misplaced something? How did you feel when you couldn’t find it?
How many of you have ever forgotten what you were going to say?
Have any of you ever overslept, woken up in a panic, and not known what day it was?
Those kinds of issues happen to most of us, at least occasionally.
But imagine how you would feel if they started happening all the time. You kept misplacing your cell phone, your homework, your library books. You couldn’t remember your address or your teacher’s name. What if you raised your hand to answer a question at school and the words you were going to say just disappeared. Or they came out all jumbled up? What if it happened so often that you started to worry about talking and became more and more quiet?
These are a few of the things that people who are living with dementia have to cope with.
With most illnesses, people cluster around and want to help you. But some people with memory loss actually lose their friends. We know dementia is not contagious, so why would people shy away?
People are scared when their friends and family members start changing. They’re worried they won’t know what to say or how to communicate. They’re worried about making a mistake. But the only mistake is abandoning a person you care about.
Lots of people are working together to make life better for those who are living with dementia. And some are those are people who are living with dementia. They say, “Nothing about us without us,” which means, “Don’t make plans about our lives without consulting us.”
How you can be an advocate
- Watch your language. Don’t use the words victim or sufferer with Alzheimer’s or dementia. These are strong and courageous people dealing with a brain disease.
- Look for opportunities to spend time with people who are living with dementia.
- Don’t worry if you don’t know what to say. Look at the person. If they’re in a wheelchair or chair, bend or kneel so you can have eye contact.
- Try to find a quiet place to talk and listen. Some people are overwhelmed by too much noise.
- Remember to slow down because some people need extra time to answer questions.
- Seek ways to connect through arts and imagination, including music, drawing, cooking, gardening, and flower arranging.
Luck. Kismet. The stars aligning. Those are all valid descriptions of our April 5th event, Creating a Dementia Kansas City.
First, we were lucky to have two great speakers: Emily Kearns, PhD, formerly of Dementia Friendly Massachusetts and Michelle Niedens, from the University of Kansas Alzheimer’s Disease Center.
Then, a lovely splash of kismet when Emily and April Roy, Director of the Plaza Library, were invited to join Gina Kaufmann on KCUR’s Central Standard.
Thanks to Central Standard and lots of grass roots marketing, almost 100 people attended from many different sectors. Our attendees included representatives from The Alzheimer’s Association, The Nelson-Atkins Museum of Art, The Kansas City Symphony, The Renaissance Festival, KC Actors Theatre, The Naka-Kon Anime Convention, the Mayor’s office of Culture and Creative Services, as well as the medical and healthcare communities, senior services providers, the library community, first responders, faith communities, social work consortiums, people who are living with dementia and their friends and care partners, community volunteers, and more.
Our vision was beautifully articulated by our two speakers: “We envision Kansas City as a community where every citizen feels welcomed, valued, and engaged.”
We’ve only just begun and we welcome your support.
Please consider joining us for our follow through Lunch and Learns.
Our Uber driver in New Delhi was a turbaned Sikh with a long gray beard. A sign hanging from the rear view mirror proclaimed, “This car respects women.” He deftly drove us through the city, navigating the melee wherein four lanes of cars compete in a two-lane space. Inside the NGO, Hope Ek A.S.H.A., the receptionist led us into Dr. Chawla’s office. Dr. Chawla has a rich voice and a magnetic presence. She is the catalyst for this center for caregivers, creating the service because of her own experience with her mother and Alzheimer’s. We were coming together to ignite hope.
“We know how hard it is for the caregivers,” she says. She and her team help caregivers throughout New Delhi and indeed, throughout the world, educating them, visiting with them and their loved ones who are living with dementia, facilitating support groups, sharing stories and ideas, offering respite and financial support as possible.
For this event, she has gathered a group of doctors, caregivers, support staff, and more. First, some of her team show us activities they do with clients who are living with dementia. These include chanting, deep breathing, gentle stretching, tapping (EFT- Emotional Freedom Techniques), and a lovely heart opening exercise that affirms “We are healthy, we are happy.” They show us painting and games that strengthen memory.
Join us for these interesting exercises:
Then a caregiver from Mumbai Skypes in. Her voice is sad and her face is drawn and pale. She wipes at her eyes as she discusses her issues with her father. Instantly, one of our caregivers steps forward to offer advice. I share ideas with her as well. Then Dr. Sahi, leader of the New Delhi Laughter Academy, guides us in laughter exercises. Within minutes, we are all laughing, even our friend from Mumbai. When the session ends, the worn and weary caregiver has been transformed into an energetic and renewed woman, one who believes there is hope.
That’s is one of the reasons we all came together: our mutual hope and our belief that everyone needs support and a sense of community and purpose.
Experience our New Delhi caregiver’s event by watching this video:
I want to share this story from Love in the Land of Dementia, a tribute to my mother and her beautiful capacity for wisdom. Here’s to embracing the divine flow of life.
Let It Be
For the first time, my mother cannot really help prepare our Seder meal. She wanders around the kitchen, pausing at the counter, the stove, the table as if to collect something lost.
“What was I doing?” she asks.
“Setting the table,” I say.
“How many people are coming?”
“Ten,” I say, spilling the spoonful of oil in my irritation. An old football cheer floats into my mind, “First and ten, do it again. Do it again.” And again. Mom has already asked me these questions several times in the last 10 minutes.
When Mom and Dad drove up two days ago, Dad’s face was tight and he went straight to the guestroom to take a nap.
“Sometimes I wish I were hard of hearing,” he told me, later that evening.
Mom’s speech is like an old record player with a needle that refuses to leave its groove. The simple anchors of life, the who, what, where, and when of things, often elude her.
“Did you remember the macaroons for dessert?” she asks, a fork in hand.
“Yes,” I say, again. I crack an egg and have to scoop shell out of the bowl.
I stir the matzo mixture and take a breath. I have trained myself to be brisk and efficient, but now, around my mother, I need to be slow and soft.
“How many people are coming?” she asks.
“Ten,” I say, impatience pinching my throat. “Let’s take a break and go for a walk.”
I wipe my hands and look for the house keys. They are not on their usual hook in the cabinet. They are not in my purse, or lolling on the kitchen table. I feel a brief flutter of shame over the impatience I felt just this morning, when Mom misplaced her glasses case for the second time. Then I feel a stab of fear: am I too losing my mind?
She stops, Hershey’s bar in hand. “They’re right in front of you, Mom,” she says, pointing to a huddled mass of metal on the counter corner. I pocket the keys and double check to make sure I have turned off the stove.
Outside, the redbuds are flowering; the dogwoods skirting newly green lawns. My mother and I walk past a closed-down lemonade stand, three broken lawn chairs,set out on the curb, and a blond, floppy-haired girl, skipping over a pink jump rope.
“It was hard when my mother died. My father just disappeared, took off walking,” Mom says. “He was a good man, though.”
I nod. I remember as much about my mother’s childhood as I do my own. The story of her mother’s death is one in a series of memories Mom has told me all my life.
We pass a woman strolling a sleeping baby and Mom smiles.
“Did you get the macaroons?”
“Yes, I did Mom.”
“Did I already ask you that?”
“Your father gets mad at me sometimes,” she says. “He thinks I’m forgetting on purpose.”
“What’s it like to not remember?” I ask.
An eager black spaniel rushes up to us.
“I start a thought,” Mom says, bending to pat the dog, “and the end disappears. If I try too hard to catch it, that makes it worse. So I let go, and eventually I get the answer. Of course, by that time, something else is going on.” Mom smiles and shakes her head. Her hair is silvery and curly; her hands like fine dried flowers; her stride crisp and full.
All weekend, I have watched her happily listen to the conversations around her, passionately asking a question, then moments later, equally passionate, asking the same question. I have listened to her stories, which have the comforting familiarity of a well-worn quilt. These stories, which sprinkled my growing-up years, are now the major part of our conversations.
That evening, we celebrate Passover with a Seder service. As the service progresses, my father tells our guests about “Dayenu,” a Hebrew word that means, “Even that would have been enough.”
“It sounds like Die-aa-nu,” he says. “You repeat it after each of the sentences I’m going to read. It’s a way of expressing gratitude.”
My mother fiddles with the prayer book and asks for the third time, “Is it time for Elijah?”
“Not yet,” my father says, his voice tense. Then he calms and begins the Dayenu litany:
“Dayenu,” we all repeat.
“If God had taken care of us in the desert for 40 years without feeding us manna,”
“If God had fed us manna without…”
And so we follow the journey of our ancestors, promising we will be satisfied. With whatever we get.
As I repeat my gratitude and pledge my satisfaction with life as it is I think of my mother. I miss her remembering all the details of my life. I miss her knowing where the silverware drawer is. I miss telling her something I’m proud of and having her remember it. And yet, she is the living symbol of Dayenu, graciously accepting her failing mind and making the best of it.
“And now, it’s time to eat,” my father says.
My mother reaches over and pats my wrist. I see the patina of softness that burnishes her, the loving core that goes far beyond mundane daily detail. I see the woman who has loved me even during the years I wandered through a difficult wilderness.
As we sip our sweet wine and break off a piece of unleavened bread, I create my own litany:
If my mother gets pleasure out of life. . .
If she remembers who I am. . .
“This is a lovely Seder,” she says. “You did a beautiful job of putting all this together.”
I press her hand, look into her smiling face and say, “Dayenu.”
The people of St. Thomas have been through a lot and many are still recovering from Hurricane Maria. But despite the hardships, they were ready to laugh for health and happiness. We were delighted to be working with our friend Arleen Evans O’Reilly, Director of the Family Caregiver Support Program, offering a laughter yoga class in St. Thomas. We met at the senior center and had a wonderful time facilitating laughter with seniors, caregivers, and people who are living with dementia. CLICK HERE to experience a glimpse of our session.
We have been experimenting with making our laughter sessions increasingly interactive. We invited our attendees to suggest ingredients for the stew and it included chicken, pumpkin, onions, carrots, potatoes, and bullion. After we added and stirred, we tasted and it was both delicious and “funny” tasting.
For our milkshake, we first asked people what ice cream they want to use. We had a lot of chocolate lovers. A few enjoyed vanilla and strawberry. We also had fans of praline cream, banana, and cherry Garcia. We held an imaginary container in one hand and we poured milk with the other hand and and said, “Ha ha ha.” After doing that three times, we scooped in our ice cream three times, adding in laughter syllables. Then, with both hands, we shook and laughed. Finally, we tasted and enjoyed a good giggle.
Ron and I continue to explore ways to add more laughter into our every day lives. The benefits of sustained intentional laughter include reducing stress, lowering blood pressure, boosting the immune system, increasing oxygen to the brain, creating a sense of connection and community, and increasing feelings of happiness. Plus, laughter offers us aerobic exercise.
Here are some of the way we’re adding extra laughter into the day:
- Laughing while we exercise. Squats are much more fun when you’re giggling as you do them.
- Adding laughter activities in while we walk.
- Singing “Ha Ha” syllables to favorite tunes. Even a simple, Row Row Row Your Boat, with Ha ha syllables, makes us laugh.
- Looking at the clock and deciding, “We’re going to laugh for one minute.”
We often visit Robert Rivest’s site for short ten-minute laughter videos, which cheer us onward. Laughteryoga.org offers more great resources. And we have fun creating our own laughter activities. If you have laughing ideas you want to share, we’d love to hear from you.
My hands were sweating as Mom, Dad, and I entered the memory care unit. We desperately wanted to pick the best care community for my mother. Pam, the head nurse, rushed towards us, arms outstretched.
“So good to see you again,” she told my father and me. She turned to Mom. “And you must be Frances. Paul has told me so much about you. I hear you’re a nurse too.”
She took Mom’s arm and they walked together down the corridor, talking. We followed and Pam stopped at a small dining area, where coffee and cookies, chocolate chip, one of Mom’s favorites, awaited us. Dad and I looked at each other and smiled. Maybe, just maybe, this was going to be all right.
We had already visited several homes and none of them seemed warm enough, caring enough, or quiet enough for Mom. What had won us over was Pam and her feeling for people who were living with memory loss, her determination to create community, her compassionate and easy way of communicating.
One of the most challenging experiences caregivers can face is finding the right community when your loved one needs care. Jytte Lokvig, PhD, regularly consults with families on this issue. Her new book, Moving & More, offers families concrete guidelines for finding the facility that meets their needs.
When visiting a care community, Jytte suggests that we ignore the lobby and the landscaping. A beautiful lobby soothes the family’s soul but has little to do with the quality of care and engagement offered. Spend at least a couple of hours in memory care.
“Remember,” she says, “you are asking your loved one to live here. Stay on after your tour and blend into the scenery, so you can really get a sense of how staff and residents interact.”
Here’s what you want to learn:
- Does the facility practice “Person centered-care?
- Do residents participate in menu and activity choices?
- What is the staff/resident ratio?
- What are the staff retention rates?
- Do all staff receive mandatory first aid and dementia training?
- Are the family, nurse, personal care and activity staff involved in creating the resident’s care plans?
- Does the activities calendar offer a blend of entertainment and interaction?
- Are there both individual, small group, and large group activities?
- Does the staff acknowledge each resident, even with a simple greeting or compliment?
After you have a sense of the community, take your loved one to visit. Have a meal with the residents. Stay for an activity program.
“Several visits like this helps both of you feel more comfortable when the move comes,” Jytte says.
For more tips and information, visit Jytte’s site at http://www.alzheimersatoz.com and consider her book: Moving and More.
I saw the red outfit and overgrown white beard even before I heard the bell ringing. I reached into my pocket to dig out a few coins. This Sunday Santa looked surprisingly like a Norman Rockwell version. Then I noticed there was a glint rather than a twinkle in his blue eyes.
“I’m asking you to give back,” the man in red said:
“I’m asking you to give back!” His voice was deep, but I didn’t hear the old jolliness.
He handed me a piece of paper with the heading: Capital Campaign, The Season for Giving, S. Claus and Associates. “Have you received good service from our outfit over the years?”
“Well, yes, I have,” I said, remembering the red bicycle that had magically appeared when I was seven.
“And do you feel like we have met and exceeded your expectations?”
“Yes, I do.” I rubbed my hands together. The wind was sharp and my fingers felt frozen.
“I really need to get going,” I said.
Santa touched my arm. “We need your help. How would you feel if you’d been working night and day for others, trying to make wishes and dreams come true, creating astonishing presents and delivering them. How would you feel if all you ever received back was the occasional cookie and milk. I have had enough. I am asking you to give back.”
I looked at Santa carefully and wondered if whoever hired him knew he was over the edge. I breathed in, but detected no odor of alcohol. His pupils were not dilated; his hands not frenetic. He didn’t look like he was on some mind-altering substance.
I reached into my wallet for a dollar or two.
“No,” he said, pushing away the money. “I want you to truly give. Not just a spare couple of bucks. I want you to understand and appreciate what I’m doing.”
Part of my brain was sternly reminding me this was an ordinary man dressed in a fluffy red suit. Then, a wave of compassion pushed through me. Here was a great mythological hero asking for help!
Santa’s legs seemed to buckle and he sagged as though he were about to fall. I took his arm and led him into a nearby fast food place, where I bought him coffee and fries and a big burger with everything. As he ate, I pulled out my cell phone.
“I’m going to be a few minutes late,” I told my shop manager.
“That’s just one of the things we need,” Santa said mournfully, as I finished my call.
“Cell phones. Can you imagine dropping down all those chimneys without calling ahead first and making sure there’s no chestnuts roasting?”
I pictured Santa, sitting in his reindeer-driven sleigh, dialing direct and collect. I wondered how many would take the call.
“Santa, people expect to receive from you. That’s what we love about you. All we have to do is act reasonable for a year, and we get wonderful gifts.”
“Things change,” Santa said. “We’ve existed for years on nothing but goodwill and good cheer. But the supply is running low. I’m thinking we should forget the old fashioned approach and embrace the age of technology.”
My throat tightened. I imagined Santa, logging in on line, charging up presents on his gold credit card, filling out W-2’s on the elves and writing up reports for OSHA and the SPCA about the reindeer. I imagined a virtual holiday, where presents simply appeared as part of an email attachment, recipients unspecified.
“What can I do?” I asked. “Do you have a list of what you want? We always give you a list to work from.”
“I hadn’t thought of that! Of course! Can I borrow a crayon and paper?”
I handed Santa a pen and a page from my note pad. As he wrote, I stared out the window, watching shoppers rush past. Most of them looked anxious and overwhelmed. They would be even more anxious if they knew Santa was considering taking a Christmas off!
Santa smiled as he handed back my pen and said,
“Now, I want to sit in your lap and read you my list.”
Before I could refuse, Santa had settled at least half of himself on my lap.
“So what would you like for Christmas?” I said, in my deepest, merriest voice.
- “A cell phone, with unlimited long distance.
- A new transportation system. Something that doesn’t leave hoof prints.
- Productivity training for the elves.
- Sensitivity training for the reindeer.
- A new suit, something with pockets.
- A new corporate headquarters — in a more temperate climate.
Santa bounced up and down as he recited his list. Each bounce made my legs twinge. Each word made my heart cringe. If Santa traded his charm, and his bumbling good will for high tech efficiency, the whole spirit of the holiday season would be radically changed.
“Now what?” I asked, when Santa had finished his list..
“Now that you’ve paid some attention to me, I feel better.” Santa stood up. He fluffed his beard, brushed a few crumbs off his belly, and said, “Ho Ho, I feel richer already. Please spread the word about giving back.”
I raced to work, feeling great. I had just given to one of the world’s champion givers. As I walked down the crowded street, I looked carefully at each rushing person, wondering who else was in need of a little good cheer.
As we move into the holiday season, Ron and I think often of our parents who went through their last holidays with dementia: my mom Frances and his father Frank. We wanted to share the season with them in ways that felt safe, comfortable, and honoring so we gradually developed these tips. Recently, we shared the tips via email and had such a great response we also want to share them with you.
Several people wrote, “These ideas are good for anyone, not just those with memory loss.”
What great wisdom–to treat each person with the tenderness and consideration that we often reserve for someone going through a physical or emotional illness.
We’d like to share our tips and we’d like to learn from you: what other suggestions do you have for helping people feel connected at gatherings?
Eight Steps to Help People Living with Dementia Feel at Ease during Holiday Gatherings
- When you’re in a group, help the person living with dementia feel safe and comfortable by having a trusted friend or family member stay beside him or her, explaining the proceedings and fielding questions from others, as needed.
- Encourage people to say their name and maintain eye contact when conversing with the person who is living with dementia.
- Make sure the person can come and go from the group as needed. Create a quiet space where he or she can rest — or appoint a caring person to drive your loved one home when he tires of the festivities.
- Have something special for them to look at, like a family photo album or a favorite magazine.
- Choose background music that is familiar to them, music of their era played in a style they resonate with.
- Prepare a few of their favorite foods.
- When talking to them, don’t correct or contradict or try to pull them into the current reality. Simply listen carefully and let them talk.
- Appreciate them for who they are right now.
Here’s to a holiday season filled with grace, gratitude and generosity.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.