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.
Thanksgiving changed the year I went vegetarian. I did not mind giving up the tender, moist turkey or the savory oyster-specked stuffing. But giving up the flavorful flow of mushroom-laden gravy was quite another thing. I watched enviously as my family ladled the luscious liquids over their mashed potatoes, turkey and stuffing. As I nibbled dryly on my carrots, green beans and salad, my lower lip protruded. I felt left out and deprived.
My brother, Dan, ever alert to the pouting big sister, came up with a solution.
“Next year I will make special vegetarian gravy just for you,” Dan promised.
Years later, that special vegetarian gravy has become one of my favorite Thanksgiving rituals. I begin fantasizing about it the moment the autumn leaves turn crimson. I know that in mere weeks, my brother and his family will arrive and I will have my yearly boost of family and feasting, highlighted by gravy.
When my brother calls to tell me his travel plans, I write his arrival time and GRAVY on my calendar. The night he comes to town, we make the shopping list together, avidly discussing how many pounds of mushrooms we need for both the carnivore and vegetarian pots of gravy. I relish the early-Wednesday morning trip through the grocery store, where Dan and I and our children carefully select the foods we will be making the next day. We linger in the produce aisle, filling several sacks with gleaming white mushrooms and buying rustling yellow onions.
On Thanksgiving Day, Dan and I and other family members spend long, luxurious hours cooking. Dan mans the stove and I manage the slicing and chopping. Together we snap, peal, slice and dice the vegetables that will accessorize the turkey. I take special pleasure in wiping clean and slicing the mushrooms, then bringing my brother the brimming bowlful. When he has nodded his approval, I get out the old copper pot I bought in Germany in the early seventies. This year, Dan is improving his already amazing gravy. With his new immersion blender, he creates a rich base of caramelized onions, whose flavor surpasses that of the lowly vegetable cube. He adds in a little flour, then gentles the mushrooms into the onion broth. When the pot is bubbling with thickening nectar, he says, “Taste this and see what you think.”
I always think the same thing—“Wow, this is great.”
We are in a state of giddy and satisfied exhaustion by the time our guests arrive. We share grateful prayers with everyone and lay out the feast, including plenty of turkey-based gravy for the rest of the family.
Then comes the moment I have been waiting for: I sit down, my own personal pot of gravy poised by my plate. I cover the mashed potatoes, carrots, green beans, and salad with the aromatic concoction and I savor every bite. But more importantly, I savor the bounty, creativity, and love that have gone into this simple dish. Through this gravy, my brother speaks with his hands and his heart, saying: “I care about you and I am going to make sure you are not left out and that you have something fantastic to eat.”
And now, if you’d like to create a Thanksgiving love story, bring home this delicious gravy.
Dan Barnett’s Chicago Style Never-Enough-Mushroom Vegetarian Gravy
2 large onions (chopped)
2 pounds (or more) white button mushrooms sliced (can add some portabellas for enhanced flavor)
1 cup of white wine (of lesser quality)
Salt & pepper to taste
To create the gravy base:
In a four -quart pot, pour a thin layer of olive oil and turn the burner on medium.
Add the onions and sauté for10-15 minutes until they are caramelized (golden brown)
Add water until the pot is about half full.
Simmer slowly for 30 minutes.
Blend the onion water mixture using either an immersion blender or by transferring the mixture to a food processor.
Once you have the gravy base
Add the 2 pounds (or more) of sliced mushrooms, white wine and fill the pot with water until it is 3/4 full.
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.
September’s Memory Cafe featured a lively team of educators from the Nelson-Atkins Museum of Art. Using the arts to draw us together, they showed us the Chinese art form of painting pictures of bamboo. About fifty of us gathered in the the library’s spacious lower level. Colorful plastic cloths covered our tables, making it easy to distinguish our drawing paper and painting supplies. All of us eagerly dipped our special bamboo brushes into the ebony paint and made short pushing movements, replicating segments of the plant’s stalk. Then our educators showed us drawings of bamboo foliage and we experimented with wispy thin lines of leaves.
• To add extra meaning, connect the artistic activity with something in your partner’s past.
• Invite an intergenerational mixture of artists, from children, grandchildren, art students, and volunteers to join your partner and add encouragement.
• Create a variety of art-related activities, including visiting galleries or looking at pictures from magazines, as well as painting, drawing or various media.
The table was spread with an array of Czech delicacies: apple strudel, special sandwiches with flowers of ham atop fresh baguettes, a bountiful tray of strawberries, grapes, and apple slices.
“This is the way we welcome people here in Prague,” said Lucie Hajkova, social worker and coordinator of respite care for the Czech Alzheimer’s Society.
Ron and I were visiting the Gerontological Centre and the Czech Alzheimer’s Society, which are both housed in the same building. The two organizations work together to offer clients everything they need, from psychological counseling, to memory testing, to social work services, to healthcare. We came to learn and to present a laughter yoga session.
We gathered with staff members around the table to learn about the center, which was started in 1997 by Iva Holmerova, MD. along with Hana Janeckova, PhD. Hana was putting together training materials for caregivers when she was contacted by Alzheimer’s Disease International. They wanted to know more about her work and they invited her to an international conference in Jerusalem. That conference was a turning point. Hana left it inspired and determined to help Czech families that were dealing with dementia. She contacted Iva and both saw the need to offer education, diagnosis, support, and care for people living with dementia and their families in the Czech Republic. Today, both centers are flourishing.
We were impressed with the dementia services they offered, which included home care for people who need help with bathing, dressing, eating, exercise or more. The building holds a respite center. When families need renewal time, or when people living with dementia need extra care or healing time, they can stay in respite for up to a month. The Centre also hosts a day program that offers a variety of activities in a homey and comfortable setting,
Even more impressive than the Society’s services were its staff. Each had a passion for this work, a love for those who are living with dementia, and a compassion for their families.
We had a wonderful time sharing a laughing session at the day center—our first international facilitation. We sat in a beautiful circle of people living with dementia, staff, family, and friends. We couldn’t have done it without our translator, Eliska, who captured the energy and essence of what we were saying. And once we all started laughing, we were beyond the constraints of language. Click here to experience a bit of laughter in Prague.
Eliska Brouckova, psychologist, consultant/advisor for people with dementia and their care givers
Martina Matlova, Director
Petr Veleta, PhD, dancer, dance therapist
Marketa Splichalova, psychologist, consultant/advisor for people with dementia and their care givers
Eva Jarolimova, PhD, psychologist, consultant for people with dementia and their care givers
Hana Janeckova, PhD, co- founder of the Czech Alzheimer Society, head of governing board of Czech Alzheimer Society, University teacher, researcher
Lucie Hajkova, social worker, coordinator of respite care in homes of people with dementia.
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.
Even before Tomislav (Tom) Huić, Vice president of Alzheimer Croatia had a personal involvement with dementia, he was helping the Croatia Alzheimer’s Society with their marketing. As a professional marketer and co-founder of a successful ad agency, he wanted to help the fledgling, all-volunteer non-profit, and he often offered them his professional expertise. Then his mother began having memory issues and Tom became more involved. Today, he is one of the three full-time volunteers who run the 20-year-old agency.
We met with Tom at the Hemingway Bar and Cafe in Zagreb, Croatia, wanting to learn more about ways the society was educating and assisting people across the country and the region.
“Every year, we offer a professional workshop,” he says. That workshop, plus donations, provides the Association’s only operating money.
Tom understands the importance of collaboration and education. With a grant from the European Union, he and partners created dementia training materials for nurses. They presented the information to healthcare professionals in parts of Croatia and Slovenia. The programs were well received and he is working on presenting them in other parts of the region.
Tom also created a partnership with pharmacists in Zagreb. When elders came in to pick up medications, they were invited to take a short cognition exam. Sixty percent of the participants failed the test and they were given contact information for the Society. But only a handful of those contacted Tom and his team.
“We still have stigma here,” Tom says. “Plus, many people mistakenly think memory impairment is a natural part of growing older.”
They are collaborating with nursing homes and with governmental health agencies to provide guidelines for memory care beds.
No money. No budget. Lots of ideas. Too few people and too few finances to implement them. The task ahead of Alzheimer Croatia seems daunting. But Tom and his team are not daunted. They are educating family and professional care partners through a variety of pathways, offering much needed information and support.
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.
Laurie Scherrer is a light in the universe. I met her on the radio, when she co-hosted the ground-breaking program Alzheimer’s Speaks, with Lori La Bey. I was instantly inspired by Laurie’s warmth, honesty, humor, and insights. Each time I talk to her, I have fun and I learn from her. Recently, I asked her, “How can I support you in the wonderful advocacy work you are doing?” Laurie answered, “You can repost this blog, What They Don’t Tell You about Dementia.”
Laurie’s post is not just inspiring: it could be life-changing for someone who is newly diagnosed with dementia. After reading it, you’ll want to subscribe to Laurie’s blog.
What They Don’t tell You About Dementia: by Laurie Scherrer, DementiaDaze.com
When I was diagnosed with dementia (Early On-Set Alzheimer’s and Frontotemporal Degeneration) the doctors told me and my husband:
- My working days were over
- I needed to “Get my affairs in order and see an attorney”
- The time would come when I wouldn’t recognize my loved ones
- For any additional information we should go to the Alzheimer’s Association Website
- I may experience “sun-downing” in the late afternoons
- Come back in six months to see how rapidly you have progressed
What the doctors SHOULD have told us:
- There are many things that can aggravate or enhance the confusion and agitation that comes with dementia. With observation and patience, you may be able to recognize what triggers these symptoms. For example noise, stress, over-stimulation or lack of sleep. These triggers are not the same for everyone.
- Once you recognize the triggers you may be able to find ways to lessen their impact. For example, use earplugs when in a store or restaurant to reduce the noise, keep gatherings small to avoid over-stimulation, and when needed take an afternoon nap.
- The more independence you give up and allow other people to take care of – the more dependent you will become on others. Change your thought process from “I can’t do this anymore” to “How can I accomplish this task (what changes or modifications can we make to assist me).”
- On days when you are using a lot of cognitive reserve your symptoms may be strong (usually in the afternoon). This is your brain saying it is tired and needs a break. Try listening to some music or taking a nap.
- It is OK to take some time to grieve for your losses and accept that life will change. Most people need to experience this after diagnosis and again as their abilities change. In addition to grief, you may experience shock, anger, denial and sadness. These are normal reactions that can help you come to terms with your disease and hopefully help you to move on.
- Get involved with others with dementia as much as possible. There are a number of groups that offer video chats with other people living with dementia so you can socialize, ask questions and encourage each other. dementiamentors.org offers a mentor program so you can have weekly chats with someone living with dementia.
- Stay active and socialize with old friends and new. Once you curl up into yourself it is hard to get out. Enjoy life, friends, family and activities for as long as you can.
- Build your passion to fight back! Sometimes it is the passion within us that drives us to continue fighting. Get involved in advocacy work to educate about dementia. Contact Dementia Action Alliance at daanow.org to get started.
- You will have good moments when you feel “normal” and think you should go back to work and you will have bad moments when the world is a fog (dementia daze zone). You may feel confused and disoriented and find it difficult to think. There will be times when nothing seems to make sense and you can’t remember how to do things and then the fog will go away (at least for awhile). It’s OK to admit you are having a bad day.
- Dementia is more than memory loss. You may experience problems with your balance, lights flickering in your eyes, hallucinations, develop fears, or smell things that aren’t really there. Don’t be frightened, keep track of any changes or strange feelings to see how often they occur
- Dementia can progress fast, but in most cases it is a long slow progression. You may want to keep your affairs in order, but by implementing changes and strategies you will be able to overcome many obstacles and live a beneficial and happy life for some time.
Since I’m sure your doctor said about the same thing as mine, I hope you find this helpful. Now go enjoy life – Live, Love and figure out how to make adjustments to over come your obstacles.
My motto is: I don’t want just to survive – – I want to live and thrive!
Love & Laughter,
“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