Taking Care of Yourself
Fulfilling the Bucket List, Trip by Trip
Our friends Elizabeth and Charlie Miller are a constant source of inspiration. Here is one of the many ways they embrace life.
Elizabeth and Charlie knew they had to instantly work on their travel bucket list. When they met and fell in love, Charlie had been living with dementia for four years. He had not traveled much, but he wanted to see the world with Elizabeth. He asked a friend to help him plan a romantic trip to San Francisco, where he proposed to her.
After she said, “Yes,” they combined their love of beaches and nature and began adventuring, going on driving trips, taking cruises, and sharing a multitude of experiences. When flying grew too complicated and stressful for Charlie, they focused on local day trips or short driving trips.
“I used to have to travel alone,” Elizabeth says. “Now, I travel with Charlie. He enjoys the trip in-the-moment. How wonderful to have all these shared experiences. Plus, it’s renewing to be outside of our routine.”
Recently, Elizabeth and Charlie were driving around and Charlie said, “What was that long cruise last fall that had so many beautiful places?”
Elizabeth stopped to think. “Hawaii,” she said.
“Hawaii,” Charlie said, his eyes bright. “Wasn’t that the best cruise ever?”
Elizabeth smiled and felt a deep sense of happiness and connection. “You are right. It was the best cruise ever.”
To make every trip “the best” here are a few flying travel tips from Elizabeth:
- Try for a non-stop flight at a time best for the person living with dementia.
- Call TSA in advance and arrange for assistance in getting through screening.
- Ask for a Pre-boarding pass to minimize the stress in boarding.
- Get a business-type card that says, “Thank you for your patience with my companion. He is living with dementia.” Share this information, as needed.
- Carry a travel packet that includes a letter from an MD, stating that your companion has dementia, and a medical power of attorney. Include doctors’ names and contact information as well as emergency contact information.
- Carry a bag of essentials: water, snacks, medications, a change of clothing, and activities.
- Be flexible, in the flow, and have fun!
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together
Share this:
My Favorite Form of Brain Fitness
As the daughter of someone who lived with dementia, I do a lot of things to promote my brain health. I try to walk 10,000 steps a day, along with other exercise. I eat blueberries and broccoli. I work on crossword puzzles, occasionally flirt with a new language, try new things, and sing. But a recent study revealed that I was doing something else that was cheering on my brain, something I hadn’t even counted….
Yes, eating dark chocolate. I am in love with this Maine-Syracuse Longitudinal Study (MSLS), of 968 people that asserts:
All cognitive scores were significantly higher in those who consumed chocolate at least once per week, than in those who never/rarely consumed chocolate.
“More frequent chocolate consumption was significantly associated with better performance on the Global Composite score, Visual-Spatial Memory and Organization, Working Memory, Scanning and Tracking, Abstract Reasoning, and the Mini-Mental State Examination,” said the research team, which included scientists from the University of Maine.
More Delicious News
And another study from Loma Linda University states:
“Dark chocolate, which is 70 percent cacao, is a major source of flavonoids– powerful antioxidant and anti-inflammatory components that are known to be beneficial to cardiovascular health. The California team’s initial studies at Loma Linda University have shown that absorbed cacao flavonoids penetrate and accumulate in regions of the brain associated with learning and memory.
“We are tremendously excited about what these findings could potentially mean for brain health,” said Lee Berk, DrPH, MPH, who led the team. “This may open the door for potential restorative uses for individuals with memory/recall or dementia and aging-related issues.”
Never Forget To Boost Your Brain
I now have a remedy for those days when I’m too tired to exercise, too busy for a crossword, too cranky for a brain game. Or for when I forget. On those days, I’ll simply treat myself to a taste of the dark side. And hope it leads me towards the light.
Want to learn more?
www.goodnewsnetwork.org/study-confirms-brain-and-memory-benefits-from-dark-chocolate/
www.sciencedirect.com/science/article/pii/S0195666316300459
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. 
Share this:
Five A-HaHaHa’s for Adding More Laughter into your Life
When you laugh, you change, and when you change, the whole world changes. Dr. Madan Kataria, M.D., Founder, Laughter Yoga Movement
Have you ever found yourself surrounded by brilliant, compassionate, and creative people? For months, I interviewed more than 60 such luminaries, all of whom contributed to my new book, Connecting in the Land of Dementia: Creative Activities to Explore Together. The book features easy, meaningful, and fun activities for people living with dementia and their care partners.
Dr Madan Kataria, founder of the globally acclaimed Laughter Yoga movement, taught me how important and easy it is to consciously add laughter into the day.
“Do you know the Ha Ha chorus?” he asked, during our Skype session.
I had to answer, “No.”
He began singing, “Ha ha ha ha ha ha,” to the tune of Happy Birthday to You. I was instantly laughing, as was he.
Carmela Carlyle, who is a Dementia Care Specialist, Certified Laughter Yoga Teacher, and the creator of the training DVD, Laughter Yoga with Elders, offered simple tips for adding laughter into daily life, including “Ha ha ha-ing” at traffic lights and while cooking a meal together.
From these two luminaries, I learned the importance of consciously integrating laughter into daily life. Dr. Kataria explained that laughter improves blood circulation and increases the net amount of oxygen to body and brain, which makes us feel more healthy and energetic. Laughter also makes our immune system stronger. Plus, laughing with others builds a social bond and reduces feelings of isolation.
Carmela Carlyle says, “When we laugh, our jaws move, sending a message directly to the brain to release feel-good hormones. People living with dementia can bypass the intellect and go directly to the powerful medicine of laughter.”
To add more laughter into your life, visit www.laughteryoga.org
Madan Kataria, MD, is the founder of the Laughter Yoga Clubs movement, which started in 1995 in Mumbai, India. Dr. Kataria is an internationally acclaimed speaker and a corporate consultant for holistic health, stress management, team building, leadership, peak performance and communication skills. He is associated with a number of research projects to measure the benefits of laughter. www.laughteryoga.org
Carmela Carlyle, is a psychotherapist, Eldercare Specialist, Certified Laughter Yoga Teacher and Certified Integrative Yoga Therapist. Her DVD, Laughter Yoga with Older Adults: Joyful Chair Fitness, is used all over the world. www.carmelacarlyle.com
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Share this:
Eight Steps to Help People Living with Dementia Feel at Ease during Holiday Gatherings
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 them via email and had such a great response we also want to share them with you.
Several people wrote, “These tips 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.
Share this:
Bringing Home the Gravy
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.”
For that and so much more, I am thankful.
…………
And now, if you’d like to bring home this delicious gravy, here’s how:
Dan Barnett’s Chicago Style Never-Enough-Mushroom Vegetarian Gravy
Ingredients
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
Olive oil
Directions
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.
Simmer for 30 minutes and season to taste with salt and pepper.
###
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Share this:
Six Tips for Surviving the Holiday Season When a Loved One Has Dementia
Normally, Thanksgiving was my favorite holiday, a time our family gathered together at my Kansas City home. But that November, my stomach clenched at the thought of our traditional Thursday evening meal.
My mother had Alzheimer’s and the holiday would be different. I felt alone but of course I wasn’t: there were 15 million family/friend caregivers helping the five million Americans who have dementia.
I’d been through my initial storm of denial and grief. I felt I’d been coping well with Mom’s diagnosis, focusing on offering my father extra support and trying to flow with Mom’s now spotty memory and personality quirks. But a pre-season sadness invaded me in October and I found myself dreading the alleged festivities. How could we have our usual holiday dinner, take our after dinner walks, play Scrabble and Hearts and Charades without Mom’s participation? How could we enjoy going to movies and plays when Mom was having trouble focusing and sitting still? And how would Mom react to the situation: would she feel uncomfortable and out of place? Would Dad feel protective and anxious? And more important, what would we have for dessert! Mom was legendary for her chocolate and butterscotch brownies, date crumbs, and bourbon balls. No store-bought cookies would compare.
As I stewed over the prospect of a depressing Thanksgiving weekend, I remembered the vows I had made: I had promised I would try to stay connected to Mom throughout her Alzheimer’s journey. And I had promised to see the gifts and blessings and fun in the experience.
So I began thinking: if the holiday is going to be different, why not concentrate on making it different in a creative and connective way? Here are some ideas I used to make the holiday work for me.
- Acknowledge my feelings of loss and grief. I wrote them down and shared them with a few friends. Just expressing myself made me feel stronger.
- List what I would miss most during the holiday season. My list included cooking with Mom, eating her brownies and rum balls. I asked my brother, who’s a terrific baker, to make some of our favorite sweets and I set up a place in the dining room where Mom could sit next to me while I chopped mushrooms and peeled potatoes.
- Create an activity to give our holiday a new focus. We created a simple holiday scrapbook called, “The Little Kitchen that Could,” complete with a family photo shoot and a playful script.
- Appreciate my blessings. We started our Thanksgiving meal by asking everyone to name one thing he or she was grateful for. I continued my gratitude practice throughout the holiday season, either alone or with others via telephone and social media.
- Take extra good care of myself. I treated yourself as I would a friend who’d suffered a deep loss.
- Set up a lifeline. “I’m worried about melting down,” I told my friend. She urged me to call anytime for encouragement and reassurance.
These six steps helped me enjoy my holiday and appreciate my mom just as she was. Our holiday was “different” but it was also wonderful.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Share this:
The Marvels of Movement
Dancing is like dreaming with your feet! ~Constanze
During my mom’s dementia journey, movement often inspired and connected us. Here is one of those magical moments, excerpted from my book, Love in the land of Dementia: Finding Hope in the Caregiver’s Journey. The story is set in my mom’s memory care unit.
**
Rochelle, the activity director, sticks in another tape and soon Stardust is playing.
“Let’s dance,” she says, motioning everyone to stand.
Mom looks up and I offer her my hand.
“Want to dance?” I ask her.
“What?”
“Want to dance?” I repeat, making a swirling motion.
“What else,” she says, standing up.
My parents have danced to this song many times, my mother coaxing my father onto the dance floor. I hold hands with Mom and move back and forth to the music. She laughs and does the same. I twirl her, and she walks around in a jaunty little circle. For a moment, her energy and charm have returned. I feel like I have found my long-lost mother. If my father were here, he would not be surprised. He is certain she will return to him and takes every word, every gesture of affection, every smile as a sign of hope.
“Hope is everything,” Dad told me just last week. “I find something hopeful and I milk it for all it’s worth. If it doesn’t work out, then I search for something else. Otherwise, I am in despair.”
I twirl my mom again. It is actually our first real dance together …
***
I loved my dance with my mother for the deep connection it gave me. My friend Natasha Jen Goldstein-Levitas reminds me of the other benefits of movement. Natasha is a Philadelphia, PA based Registered Dance/Movement Therapist (R-DMT) and Reiki Practitioner who does heartfelt and creative work with those living with dementia. She writes: “Among the creative arts therapy modalities, dance/movement therapy (DMT) offers the opportunity for individuals to express themselves, regardless of functional level. DMT engages the sensory systems and stimulates the physical, emotional, and cognitive areas of functioning. This movement is also a wonderful outlet for care partners.”
Samuel Beckett sums this up, He says, “Dance first. Think later. It’s the natural order.”
To read Natasha’s blog, please visit:
http://blog.adta.org/category/creative-arts-therapy/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Share this:
Four Easy Ways to Enrich People’s Lives
I wasn’t quite sure I wanted to lie on the floor on that large piece of white paper, but my first grade teacher did not give me a choice.
“Debbie,” she commanded, pointing sternly to the butcher block paper stretched on our school’s aging linoleum. Gingerly, I lowered myself to the ground, moving my arms away from my sides as instructed. Then two classmates traced around me with crayons. Our assignment that day was to draw in our features and our clothes. In essence, we were to clone ourselves using only primary colors.
Years later, at a self-exploration workshop, I again had to pour myself onto a sheet of paper and allow myself to be outlined. This time I was to draw or write in fears and beliefs along with accomplishments and dreams. This was definitely more fun than grade school and infinitely more challenging.
Just recently, I read about a “blank slate” exercise that I really liked. The booklet You Can Help Someone Live Fully With Dementia: A Guide for Family and Friends, suggests that we take an outlined profile and write down all the ways we might help a person living with dementia enrich his or her life.
I really resonated with this exercise. I also thought this was a beautiful idea to do for friends and family as well. How meaningful to think about ways to improve the lives of those close to us.
This brief book, which is accompanied by an inspiring DVD, offers simple tips to help us increase emotional connections during the dementia journey. Ideas include being enthusiastic and encouraging, thinking creatively when suggesting activities, focusing on the individual’s desires and strengths, and adopting a “no wrong way” spirit.
This succinct and compassionate guidebook reminds us of the importance of being guided by those who are living with dementia. The authors, Karen Love and Elia Fernia, are advocates who are making a difference in dementia care throughout the country.
Karen Love and Elia Femia, PhD are gerontologists and nationally known experts in dementia care. They are the co-founders of FIT Interactive, LLC. fitkits.org
For more information about living fully with dementia, please visit the Dementia Action Alliance www.thedaanow.org
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Share this:
Four Ways to Support Care Partners
We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.
Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.
The Present in the Present
I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.
Write Me
Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit. I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.
Share Memories
Reminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.
Please Stay in Touch
You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #
After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.
Please visit her website:
Website: http://www.whencaringtakescourage.com/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Share this:
Four Page-turning books
I have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.
I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.
Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered. His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.
It’s not often that you read a book about dementia care and laugh. But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.
What books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
