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.
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.
“I’ve traveled the world. Our family moved a lot when we were young,” one of our guests told us, at our August Movies and Memories program. She and her husband bent over our world map and stuck stars on some of the many places they’d lived. Another guest sighed when he looked at the map and saw Vietnam. He had served in the military there. A couple talked about living in Berlin when the Wall came down.
Our Movies and Memories travel films included forays into Paris, Iceland, Capetown, and Seoul.
“It was relaxing just watching the scenes from Paris,” said Ah’Lee Robinson, director of the Kansas City Boys and Girls Choirs. He and his singers treated us to an inspiring concert, warming us up for the films.
“Oh dear, now I want to go to Iceland,” another guest said.
In between clips, we passed around exotic spices for everyone to smell. At the end of the movies and memories adventure, everyone took home a special “Passport” booklet, created by the library’s Emily Cox, so they could record impressions and memories. To experience the event, click here.
Here are some passport questions to discuss at home:
Share some travel memories.
What is one of the most beautiful places you’ve ever visited?
What’s the farthest you’ve ever traveled?
What country has the best food?
How many of the US states have you visited?
Thanks to our wonderful volunteers, Sharon and Julie, who brighten our events by bringing treats, making popcorn, and making everyone feel so at home.
Thanks to Craig Eichelman, State Director, AARP, for helping us spread the word about this program.
We are so grateful for the continuing support from the Kansas City Public Library. They are amazing champions 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 community programs benefit early readers, job seekers, and people who are new to KC. Ron and I use their books and other services every week!
Please join us for our next adventure — Moana. This movie is so inspiring and great for all ages.
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,