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.
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
When I walk through the doors of the nursing home, I find my mother in her wheelchair, right in front of the medication cart, right behind the central nursing station, where nurses, delivery people, staff and family members congregate. Mom is bent over, her baby doll lying across her lap. When I walk up to her, I ratchet up my energy and widen my smile. I am preparing to clown her into a reaction.
Later my father will ask if I think she recognized me.
“No,” I will have to tell him. “She did not recognize me. But she did smile.”
The smile is important.
My hand waving and head bobbing does its work: Mom does smile, and I can tell she is in her own current version of a good mood.
“Music in the dining room,” the activity board reads, so I wheel her in that direction. An elderly man with a red and white trimmed Santa hat passes us in the hallway.
“Look Mom, there’s Santa,” I tell her.
Having been brought up Jewish, Mom never was all that enthralled with the Claus mythology and she has not changed.
A white-haired woman is in the dining room, busily setting up for the music program. Several patients are already gathered. The woman takes out a microphone, a boom box, an illuminated plastic snowman, and a small silver bell. I continue wheeling Mom down the far corridor, liking the sense of companionship I have from this movement.
As we stroll, a nurse carrying a plate of lettuce walks past us.
“She must have been a good mother,” she says, nodding at the way Mom is holding the baby. “She must still be a good mother.”
“She is,” I say.
I have never really said to my mom, “You were a good mother.”
Now I realize she was.
I can see that Mom is enjoying the ride. She loved movement when she was younger and was far more adventuresome than Dad when it came to airplanes, ski lifts, fast cars, and speedy boats. For her, biting breeze across the face was thrilling, not threatening. Until she became a mother, that is. Then she abandoned her pleasure in the heights and speed and concentrated on making sure we were slow, safe, and centered.
We roll back into the dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little.
Thelda moves on, singing to each of the patients gathered around, so intent on making a connection that she often forgets the words.
“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved from the memory care into the skilled care portion of the nursing home.
“Yes, I’d like her to go to any activities. She likes the extra energy.”
I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she smeared with butter and sprinkled with sugar and baked. When Mom used to talk about her mother, she always mentioned this special treat.
Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas songs. She did not willingly go to Christmas parties. She let the holiday rush by her, like a large train, whooshing past, ruffling her hair and leaving her behind.
Now, I am singing Christmas carols to my Mom for the first time. She is smiling, though really not at me. But I am sitting beside her while she is smiling and that makes me happy. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.
With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, nudging her, shaking a bell almost in her face, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.
For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that nose, Mom laughs. For several minutes, Mom stays fixated on the scarlet nose, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed. Then, Thelda dances away and Mom’s face glazes back over.
Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah.
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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.
When care partners gather and trade stories and ideas, there’s usually magic afoot. We felt that magic when we met with a group of family and professional care partners to celebrate great connectors throughout the dementia journey. We presented engaging ideas using music, nature, laughter and more.
Lisa Vetter, Director of Healthcare Sales & Marketing, Santa Marta Senior Living Community, invited us to speak at an event announcing the community’s new care partner support group. The group is led by Jennifer Walker, RN, BSN, Clinical Community Liaison, Kansas City Hospice & Palliative Care. Jennifer also facilitates the KC Memory Cafe and she is compassionate, informed, and smart. Most importantly, she has a fantastic sense of humor.
Ron and I shared ways to stay connected through singing and music, looking at works of art together, bringing nature indoors, and laughing. And our audience shared their experiences as well.
Here’s a story about nature that inspired us.
Marcie took her mom, who was living with dementia, on a fascinating monthly outing: they drove out into the country to look at the full moon. Her mother didn’t talk much anymore, but she loved seeing the night sky and gazing at the magnificent moon. One evening, as the moonlight spread over the car, Mom began singing, When the moon comes over the mountain. Marcie had never heard the song before and her eyes filled with tears at hearing her mom sing so strongly and clearly.
Here’s a story about the power of familiar music. Karen’s mom was a devout Catholic, living with dementia. Though there were many things she didn’t remember, including her daughter’s name, when she attended Sunday mass, she melodically sang every word of every hymn.
We loved sharing with this group of dedicated and compassionate care partners, who were all seeking ways to stay connected.
Here’s an extra tip from Connecting in the Land of Dementia: When you want to boost energy and lift spirits, add a splash of laughter into your life. Look at a clock and say, “We’re going to laugh for 30 seconds,” and start ha ha ha-ing. Or pretend you’re talking on the phone and hearing a hilarious joke. Or warble out the Ha Ha Chorus by singing the Happy Birthday song in “ha ha ha” syllables.
How has television shaped our lives? Nick Haines, Executive Producer Public Affairs/News, at KCPT, helped us count the ways at our August Memory Cafe. Fifty people joined us for this witty and illuminating program, including some PBS favorites: Big Bird and the stars of Downton Abbey. Nick began by showing us a few of the 20 most iconic TV clips of our time, including the space landing, Johnny Carson’s farewell show, and the tragedy of 9-11.
Then we moved onto commercials. Does anybody remember when people dressed up to get on an airplane and domestic flights served hot food on real china dishes? How about a young Donald Trump starring in a Burger King commercial? The cafe crowed went crazy over a white-coated MD, starting that he and his colleagues preferred Camel cigarettes.
Nick had us guess the two most popular non-sports TV events. (Mash and Roots.) And he set us laughing with tag lines from various products, such as M&M’s, Frosted Flakes, and Alka Seltzer.
Nowadays, people watch on so many venues and are often not conversant with the same shows. But during our cafe, we were all tuned into the enjoyment of sharing laughter, memories, and ideas. Thanks to Nick for his great talk and to KCPT for all the marvelous programming and community work they do.
And thanks to all our teammates and community volunteers.
KCPT is one of the Kansas City Public Library’s many partners in programming. Our library is an amazing champion for people who are living with dementia and their care partners. They also provide scholarships for hard-working people whose higher education has been interrupted by life circumstances. Their programs benefit early readers, job seekers, and people who are new to KC. Ron and I use their books and other services every week!
You don’t need to be artistically inclined to enjoy our next cafe on September 21st. We hope you can join us.
It took us an hour to prepare for our festive tea party and we all enjoyed every moment of it. Jennifer Walker, RN, BSN, Clinical Community Liaison, Kansas City Hospice & Palliative Care, knows how to throw a party. She brought pastel table cloths, a charming complement of paisley-printed cups and plates, along with tiered cookie holders.
For the ladies, she offered colorful fascinators (small hats you can clip into your hair) and bright boas. For the men, she had bow ties and top hats. She also brought the ingredients for tea time sandwiches and a variety of cheeses, veggies and meats. Kathi Michaels and Heidi Underwood from Leawood Gardens, and Lainey Berry, from the Law Office of Love & Blomquist, generously provided an array of baked treats, including legendary cookies from McClain’s Bakery and delectable lemon squares.
Our guest speaker, Emilie Jackson from Emilie’s French Teas, shared information about the international history, social rituals, and health benefits that come with sipping a cup of tea. After her talk, everyone set to work creating cucumber and cream cheese sandwiches, with the crusts cut off, of course. We were able to smell several different teas and each person chose a favorite to savor. The food and drink were delicious but even better were the conversations. Each table got into discussions about tea, coffee, life, and more. One guest enjoyed a tete a tete in French with Emilie, who is originally from France.
The gathering was so much fun and so engaging, with all the aromas, tastes, and textures, that none of us wanted to leave. It took us even longer to clean up after the stirring tea party, because we had to help eat the leftovers!
Click on this link for the inside story on our tea party: Memory Cafe, Tea Party
Here are a few of our favorite tea quotes:
Where there’s tea there’s hope. Arthur Wing Pinero
If you are cold, tea will warm you; if you are too heated, it will cool you; If you are depressed, it will cheer you; If you are excited, it will calm you. William Ewart Gladstone
I like the pause that tea allows. Waris Ahluwalia
A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. Eleanor Roosevelt
Please join us for our next cafe when the great Nick Haines brings us the inside story on KC local news. We can’t wait!
Our team, ready for tea
Thanks to our sponsors:
The Kanas City Public Library
The Alzheimer’s Association
The Creativity Connection, Deborah Shouse and Ron Zoglin
Kansas City Hospice and Palliative Care
Arts & Aging KC
Prairie Elder Care
The Villages of Jackson Creek Memory Care
Dennis and Carol McCurdy, Community Volunteers
Please email Deborah at email@example.com if you need additional information.
And, we hope you can join us for our next events.
I am thrilled to be a contributor to Chicken Soup’s new book, The Empowered Woman. I’m going to be featured on publisher Amy Newmark’s podcast on May 25, where I talk to her about my “empowered” story and about the dementia journey. Click here to listen to the podcast. Amy is very inspiring and I wanted to share some of her One-Minute Tips to Boost Your Happiness,
Speaking of empowered women, Amy Newmark left her high-powered career as a Wall Street analyst to take over the Chicken Soup series. After years of immersing herself in true stories of miracles, lessons learned, and hopes fulfilled, she wrote her own book,Simply Happy. Here are some of her “One-Minute Tips to Boost Your Happiness.”
Amy’s Insights for Care Partners
Counting Blessings Adds Up to Happiness
“The gateway to happiness is counting your blessings,” Amy says. “If you’re not grateful for what is in your life, how can you be happy?”
Scientific studies have proven that people who are actively grateful are happier, healthier, and more productive. Plus, they get along better with family members, colleagues, and others.
“You can easily learn gratitude,” Amy says.
To start, each day jot down three things for which you’re grateful. Strive for three different ideas each day. At the end of the month, you’ll have documented nearly a hundred blessings.
“Writing and speaking your gratefulness changes your perception,” Amy says. “You start looking for good things during the day. You can share your blessings with your partner and encourage him to consider his own.”
Some people drop the blessings into a box, and then read them at the end of the day or the end of the month.
Smiling Serves You
Smile even when you don’t feel like it. Often, when you smile, people smile back. This boosts everyone’s spirits and energy. If they don’t give you a grin, it doesn’t hurt you.
“Your smile will change the way people react to you,” Amy says.
Zipping from Zero to 60 Brings Joy
Set a timer for 60 seconds and zip through a task you’ve been putting off. File the insurance policy that sprawls across the dining room table. Unload the dishwasher. Take your vitamins.
“Doing even one of those tasks every day will lighten your spirits,” Amy says.
Dropping Perfection and Embracing Your Own Abilities
Abandon your pursuit of perfection and strive for your own version of excellence.
“When you try to be perfect, you can’t get a lot done,” Amy says. “For most of us, it’s better to do five things at 90 percent than one thing at 100 percent.”
I love Amy’s final piece of wisdom:
“Treat yourself nicely,” she says. “Use the fragrant soap you save for guests. Indulge in a rich bit of good chocolate or a fresh crisp apple. Put the good sheets you save for company on your own bed.
Give yourself a tiny pleasure every day.”
For more happiness boosts, read Simply Happy.
“Dad always liked a big Father’s Day celebration,” my friend told me. “But now he’s deep into dementia; I’m not sure he would notice.” When Ron’s dad Frank relaxed into dementia, Ron and I often struggled with how to approach Father’s Day. Even though Frank didn’t know what day it was, we still wanted to honor Frank as a father. Here are four fabulous ways to celebrate when Dad has dementia.
Reminiscing over Favorite Foods
We brought in a meal created from some of Franks’ current favorites and some gems from the past. Frank’s wife Mollie made her world-famous brownies and legendary rice pilaf. We bought cooked steaks and baked potatoes and as we ate, we talked about meals past. Inspired by the familiar tastes, smells and textures, Frank recited one of this favored old phrases: “I’m cool to other women but I’m hot tamale (Hot to Mollie.)”
Naming His Tunes
Frank and Mollie liked to dance occasionally and for one celebration, we printed out song lyrics and sang Frank and Mollie some of their old favorites. We didn’t sound like Sinatra or Fitzgerald as we warbled “It Had to be You,” or “Stardust” or “Three Coins in the Fountain” but we did sound sincere!
Ron and I created a HERO Project for Frank, a story-scrap book that incorporated highlights and photos from Frank’s life, along with a meaningful storyline. We also created one for Mollie. We read the HERO Projects with Frank and Mollie, using the stories as conversational catalysts. Frank enjoyed the experience; we enjoyed reading aloud with Frank and remembering shared experiences.
Celebrating Special Qualities and Life Lessons
As we sat together, we talked about some of Frank’s many stellar qualities, which included his easy-going nature, his natural charm, his entrepreneurial spirit, and his willingness to try new things. “Did I really do that?” Frank asked, as Ron described the bowling alley Frank and his brother owned and operated. “You did,” Ron said.“That was really something,” Frank said.
Frank’s comment summed up our Father’s Day celebration: it was really something. Just being together was wonderful. And taking time to really celebrate Frank with a tender mixture of food, photos, stories, and conversation was pure magic.
For more ideas on Naming His Tunes, please visit the exciting MusicandMemory.org
Creating Low-Cost, Engaging Activities
Alice looks blankly at the magazine as Kimberly Clark turns the pages, pointing to various pictures. “What do you think of this? Or this?” she asks, pointing to a rose, a table set for tea, a bundt cake. When Kimberly touches a picture of a train, Alice smiles. Although Alice, who is living with dementia, can no longer tell her own stories, Kimberly has heard tales of her adventurous past. When Alice was a restless young woman, she and her new husband occasionally jumped on a freight train and took a ride. This photo will be the centerpiece of the collage they are making. As Program Coordinator at ARC Jackson County, a lifespan respite program in Medford, Oregon, Kimberly is an expert at creating low-cost, engaging activities for people who are living with dementia.
Creating collages is easy, inexpensive, and relaxing. Medical offices will donate their old magazines and she also collects periodicals from friends. If Kimberly knows her client’s family stories, she seeks magazines that have illustrations relevant to them. She lays out a variety of magazines and asks, “Which one do you want to look at first?” They sit together and Kimberly slowly turns pages, listening for comments, watching body language, and facial expressions. When she sees interest or excitement, she may ask, “What are you looking at?” or “What does this remind you of?” She then tears out the picture and sets it aside, so it’s not distracting. Once they have a nice group of photos, they start on the collage, cutting and pasting together.
“The project is empowering and can spark discussion,” Kimberly says. “Plus, we can take our time and we have something artistic and interesting to discuss when it’s done.”
She often uses the finished collage again and again as a conversation starter.
Kimberly also engages people through simple nature walks, where they notice the colors, shapes, wildlife, and collect vibrantly colored leaves, pinecones, acorns, and more.
She celebrates people’s individuality by writing their name on watercolor paper in black marker and inviting them to fill in the letters and surroundings with colored pencils.
When people need a little exercise and a good laugh, she invites her dog to join them in a sparkling game of balloon volleyball. Her dog is an expert at keeping the balloon aloft and soon everyone is supporting him in this uplifting endeavor.
“Even if you’re not in a good mood, doing some kind of art, exercise, or creative project makes you stop and appreciate the present,” Kimberly says.