An Alzheimer’s Holiday Blessing

As my mother’s Alzheimer’s progressed, her spiritual openness increased.

This is an excerpt from my book Love in the Land of Dementia that describes Mom’s new way of celebrating the holidays.

**

We roll back into the facility’s 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 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 baked, then smeared with butter and sprinkled with sugar . 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 song. She let the holiday rush by her, like a large train, whooshing past and leaving her behind.

Now, I am singing Christmas carols to my Mom for the first time and she is smiling. 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.Fran

With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, 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 scarlet nose, Mom laughs, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed.

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.Here’s to a meaningful and fun holiday season.

I look forward to connecting with you when I resume blogging in early January.

Share

Drawing out the Inner Artist: Seven Tips for Engaging People who have Dementia

“Every child is an artist. The problem is how to remain an artist once he grows up.” Pablo Picasso

Sharing the arts is one of our passions. We so appreciate the insightful work of Michael Samuels, M.D., co-founder and director, Arts as a Healing Force. These are his words, which originally appeared in the Huffington Post:

Anyone can use the healing power of art to reach a loved one living with Alzheimer’s disease. All it takes is an ordinary person who loves and cares for another. A recent article in the Boston Globe says, “Making music, painting or dancing — and seeing or hearing it — may be the most effective treatment for dementia to date.”

There has been new exciting research about art and Alzheimer’s that sheds light on this remarkable way of healing. Music and art stimulate areas of the brain not affected by Alzheimer’s and accesses memories through routes that avoid affected language centers. Art actually helps the brain navigate new neurological communication pathways. Even if the Alzheimer’s patient is unresponsive and can’t remember where they are, a song can stimulate the sweet memories of youth that lay long buried.

Any art that the Alzheimer’s patient enjoys will open a huge new way of healing — for yourself and for the one you love.

TIPS:

You can do it. Professional training is not necessary; anyone can be an artist/healer for a person living with Alzheimer’s.

Keep it simple. Music is the easiest and most researched way to reach a person with Alzheimer’s but you also can use painting, sculpting and poetry. Gear your art to the person’s skill level at the moment.

Go into the past to heal the present. Art evokes memories. Any art that brings up a memory is powerful. A song from a past event evokes the memory of a first kiss. A painting or photograph of the family home can help evoke childhood memories.

Make it stimulating. Choose bright colors, collage from old photograph albums, lively music, dances.

Make art in a sacred space. Make the place as wonderful and beautiful as you can. Play soft music in the background — make the lighting bright enough to see easily, add scents from aroma therapy and even make a small altar with loved objects from the past.

Support with loving kindness and compassion. Make all your comments nonjudgmental and loving. Art and healing is about process, not the product. It’s all about love and relationship.

Ask them to tell you the story about the artwork. If your loved one can still speak ask them to share the memories that come with the art, music or words.

According to the Alzheimer’s Association, music and art can enrich the lives of people with Alzheimer’s disease by allowing for self-expression and engagement even after dementia has progressed. Many organizations are using the power of art to help those living with Alzheimer’s. The Assisted Living Federation of America (ALFA) has an annual art contest at senior centers to encourage elderly people to stimulate their brains by making art. The I’m Still Here Foundation started Artists for Alzheimer’s initiative (ARTZ) that helps more than 10,000 Alzheimer’s and dementia patients attend arts events. This greatly enhances the lives of Alzheimer’s patients and reduces their symptoms.

Michael Samuels, M.D.Co-founder and director, Arts as a Healing Force

MICHAEL SAMUELS M.D. is a physician, artist, guided imagery specialist, and one of the foremost experts in body, mind, and spirit medicine today. He is the co-founder and director of Arts as a Healing Force. Samuels teaches at San Francisco State University’s Institute of Holistic Studies and is the author of 22 books, including the bestsellers The Well Body Book, Seeing with the Mind’s Eye, and the Well Baby Book. His latest book is HEALING WITH THE ARTS: A 12-Week Program to Heal Yourself and Your Community, co-authored by Mary Rockwood Lane, R.N., Ph.D.51ANvRyTJWL._SX258_PJlook-inside-v2,TopRight,1,0_SH20_BO1,204,203,200_

Five Steps to Becoming an Advocate for Those Who Have Alzheimer’s: Lori La Bey Shares Her Story

Lori La Bey was sick of all the negative information about Alzheimer’s Disease.
As a family caregiver for her mom, Lori didn’t appreciate the fear that surrounded the subject. 
 
 “I wanted to talk about hope and joy and the positive aspects that empower caregivers and those who are diagnosed with the disease.”  Lori says. 
 
Lori had a lot to share on the subject. Her mother had been dealing with dementia symptoms since the mid 1980’s and in 1996, she received a formal diagnosis of  Alzheimer’s disease. Lori, then age 37,  understood the challenges and stresses of being a working parent and a family caregiver. She understood the issues that her mom grappled with as she lived with Alzheimer’s. She also knew the feelings of joy, hope, and connection that she and her mother constantly shared. 
 
Stepping Out and Sharing
 “You have to tell your story,” friends told her. In 2009, Lori began to blog, focusing on the positive aspects of her experiences with her mom. 
 
“People were thrilled to hear the hope in my stories; they were tired of hearing all the doom and gloom,” Lori says.
 
Blogging led to speaking and speaking led her to training the staff who worked in her mom’s care facility and then to training in other care facilities, organizations and businesses. In 2011, Lori started her Internet radio program, Alzheimer’s Speaks. She recently launched a resource directory, which allows both professionals and the public to share information, and she is a leading resource in helping communities become more dementia-friendly. She has gradually eased out of her successful real estate career and has devoted herself to “Shifting Caregiving from Crisis to Comfort.”         
 
Five Foundations for Advocacy
Here are some of Lori’s tips for becoming a more effective voice for caregivers and for those who have Alzheimer’s. 
 
Rename Yourself
Consider yourself a “Care Partner” instead of a caregiver. “Caregiver sounds like you’re giving it all away and in reality, you’re sharing,” Lori says. “When you give, you receive.” 
 
Start the Conversation
Don’t be afraid to talk about your experiences with dementia. Often, you’ll learn friends, coworkers and even strangers are dealing with the same issues. 
 
Share Your Story, Your Feelings and Your Truth
Lori knew being vulnerable when sharing her own stories and authentically expressing her moments of sadness, triumph, anger, frustration, weakness, and happiness allowed others to feel comfortable  expressing their own emotions and stories.
 “Discussing all your feelings invites deep conversations and helps you build amazing relationships,” Lori says.  “Life is not perfect and we have to stop pretending it is.” 
 
Set Your Priorities
Give up trying to please everyone. “Focus on pleasing yourself and the person you’re caring for,” Lori advises. “Everyone else is secondary.”
 
Seek Involvement
Join a support group or start one to help others. Sign up for a dementia fund raiser, such as the Memory Walk.  Get to know people who have dementia. Start talking about the disease – share what you know. It doesn’t need to be complicated. Take dementia on as a cause.  
 
*****
lori la beyTo learn more about Lori and to hear our conversation with her click here on Alzheimer’s Speaks Radio.
For more information, please visit Lori’s website:
http://www.AlzheimersSpeaks.com   Lori La Bey, CSA, COS, AOSAD, Radio Host
Recognized by Dr. Oz and Sharecare as the #1 Influencer Online for Alzheimer’s!
651-748-4714

Life and Death and HoHoHo

Recently I’ve been collecting inspirational quotes that remind me to make the most of every day:

“Every day is an epic journey!”   Diana Nyad, long-distance swimmer

“Play is a tool for social change,”   Jessica Matthews, Uncharted Play

“What day is it?”

It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.”   A.A. Milne

“Write it on your heart that every day is the best day in the year.”   Ralph Waldo Emerson

Of course, one reason I’m focused on meaningful living is because I’m also thinking about dying. How do you move through this holiday season, experiencing life to the fullest, and also honoring and feeling connected with those who have died?

Here are a few ideas I have tried. I’d love to hear from you: how else do you acknowledge and honor your dead?

Feed Body and Soul

We always have some of my parents’ favorite foods. My dad particularly liked Planter’s Deluxe Nut Mix. He really adored the cashews, but he didn’t want to spend the money to upgrade to all cashews. He preferred to pick out the deliciously rare morsels, often leaving behind a plethora of peanuts, almonds or hazelnuts. In his honor, we repeat the ritual. Thank goodness, someone finally likes peanuts. Now all we need is a champion for the almonds.  Did you know that memorial cashews have no calories?

Share Something Tangible

I like to wear my mother’s black blouse emblazoned with silver sequins at least once during the season. When Mom wore this blouse, it signified she was going out someplace elegant.  She accompanied it with a long black skirt and high heels. When I put on my ordinary black slacks and tie up my ubiquitous black tennis shoes, I imagine my mother shaking her head. “Don’t you have any better shoes, dear?” my mother prods me from beyond the grave. “A little lipstick would be nice.” That’s a lovely part of our post-death ritual: I hear my mother’s suggestions and I fondly remember her love of dressing up.

Have the Conversation Anyway

A dear friend from Baltimore died this year, way before his time. He loved movies and always called to give us his review of any new films. Particularly this time of year, when we go to the cinema, we think about our friend and discuss his possible opinion of the film.  Which character would he have identified with? What would have been his favorite scene? How many stars would he have given the show?

I feel grateful that the people I love are part of my attempt to live an “epic” life.  In fact, my dad inspired me to use the George Burns quote that ends this piece. I’m thinking about Dad and his dear friend Hank, recently deceased. They might be holding drinks, a little torchy jazz music in the background. Dad might lean over to Hank and say, “You know I’m feeling a little old today. I just realized that when I was a boy, the Dead Sea was only sick.”

Three Lessons in the Art of Love

When he was in his early eighties, my father taught me about the possible depths of  his love. I knew my parents had a fine relationship but I never realized how much my father adored my mother. There was little hint of his admiration and passion in their visible every day relationship. Only after my mother sank into Alzheimer’s did my grief-worn father reveal his immeasurable love. Oh, he didn’t talk about his feelings: he was, after all, a WWII veteran and a man raised to stoically endure for the sake of his family. But he showed me his devotion every day.

Lesson I:

“Isn’t she beautiful?” he might say to me, as we sat with mom in the nursing home’s private dining room, sharing a lunch I’d brought in: my parent’s favorite broccoli soup, half a tuna fish sandwich and a brownie.

The first time he said this, Mom wore a little fleck of mayonnaise-laden tuna on her cheek and a blob of greenish soup on her bib. Her hair was greasy—she’d been resistant to taking a bath.  To me, she looked like an old crone from the fairy tales, the kind of dirty, mysterious witch who might whisper a cryptic piece of wisdom that would save your life, but who certainly wouldn’t win a beauty contest. I couldn’t yet see what my father saw.

Lesson II

“Your mother looks so pretty in that sweater,” my father said a couple of weeks later. We were strolling the corridors of the memory care unit. Mom was shuffling along, holding each of our arms, her head bent.  My mother’s former wardrobe had gone the way of buttons and zippers and she now wore primarily sweats. I hadn’t really noticed her outfit but I stopped to look. Her pink sweatshirt echoed the blush of color in her cheeks. When she looked at me and smiled, she might have been wearing a rose chiffon evening gown: her face glowed.

Lesson III

“I’ve discovered a sure-fire way to make your mother smile,” my father said, when Mom was deep into the advanced stages.  We were seated next to Mom’s bed, watching her twist her sheet. I scooted forward, eager for my father’s insights: my usual ways of making Mom smile were failing me and I felt bereft when  she and I were unable to connect.

“Watch this,” he said and he leaned forward and gave Mom a series of light kisses on her cheek. She smiled, then she giggled, and her beauty shone so strongly that I fully understood what my father had always known: beauty is there if you’re looking with your heart.

Waving the White Flag

“Caring for my mother is teaching me to let go of perfectionism and be in the flow,” a friend recently told me. Learning to occasionally surrender control and move with the flow has been one of the gifts caregiving brought me. Here’s a story I wrote about the art-form of surrender, an art-form I’m still working on.

Waving the White Flag

First, I lost the freelance job that would have supported me for the next two months. Then I discovered I needed outpatient surgery only minimally covered by my insurance. Next, a torrential downpour made archipelagos of my basement furniture. Instead of spending the evening creating a stunning new resume, I was duct taping trash sacks to the dribbling basement walls and sopping up the puddles with towels.  I started upstairs to search for more trash sacks and tripped over a stray board, left over from the rascals who water proofed my basement! I picked up the board and was instantly stabbed with a splinter. Grabbing a sodden white towel to stem, I stomped up the stairs.

“I give up,” I said to the dirty dishes in the kitchen sink. “I can’t take anymore,” I said to the pile of unopened bills cluttering the kitchen table. I shook the white towel and water flew across the counter tops. Then I remembered the old westerns, when the bullet-riddled good guys tie a handkerchief on a rifle butt and waved it at the enemy, just to get a moment’s respite.

It was time for me to officially throw in my towel.

I went outside and tied the towel to the board. I walked into the yard and waved my flag at the sky and said, “I surrender.” It was a good thing too, because I suddenly realized I was ankle deep in water. And I was wearing my good shoes.

I leaned the flag against the porch and dragged myself up to bed.

The next morning, the beat-up-looking flag made me smile. I felt better now that I had officially let go of control. Every time I came in and out of the house, I saw the flag. Despite that constant reminder, I still struggled. Sure, my basement dried up and yes, I got a new client. But I felt “on the edge” rather than brimming with abundance .

“Will you make a white flag for me for my birthday?” I asked my daughter Sarah.

As soon as I spoke those words, I worried: What if I don’t like the way the flag looks? What if it simply isn’t what I envisioned?  What if it’s too large or too small? Then I had to laugh at myself: I wanted control over everything, even the shape of my surrender!

The morning of my birthday, Sarah put a long pole in my hands. It was spray painted gold, with an elegant carved top and held a beautifully proportioned, dazzling white flag. The flag was aesthetic, dramatic and elegant. Slowly I walked outside and hung the flag near my porch light, where it was fully visible yet sheltered from the rain. The flag tilted a little to the right. I climbed onto a chair to straighten it and by the time I climbed down, it tilted again. I tried again, perfect, and yet, the moment I stepped off the chair, the flag became askew.

Then I realized, the flag was already working, reminding me to flow with imperfection, to enjoy what was offered. I saluted my crooked flag and went inside to make a birthday wish.

 *****

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. For a signed copy, contact Rainy Day books:  913-384-3126

Share

Kindling Holiday Magic During Seasons of Change

“There’s a story behind these butterscotch brownies,” I told our Thanksgiving guests, as my brother Dan served dessert. “Mom created the recipe when Dan was six and became allergic to chocolate.”

There was a collective gasp as people imagined the horror of being allergic to chocolate. Then there were satisfying sighs as they tasted the melting sweetness of the brownies; Dan had re-created the recipe when my mother, disabled by Alzheimer’s, could no longer bake. Fortunately, Mom enjoyed sweets all her life and we always shared the story of these treats with her, reminding her how much we loved and appreciated her.

These brownies were one way my brother and I honored our mother during the holiday season.

I recently reached out to several exceptional people for advice: how do we take care of ourselves and our loved ones who have Alzheimer’s during the holidays?
Here are their words of wisdom:

Let go of the Past and Embrace a Plan 

Linda Moore, PhD, psychologist and author of What’s Wrong With Me?, reminds us to separate our feelings from the facts. For example, a caregiver might think, “My mother’s Alzheimer’s is going to ruin my holiday,” instead of realizing,  “‘My mother’s Alzheimer’s may make my holiday different.”

“Once you can understand the holiday celebration may be different, you can plan and orchestrate a gathering that supports a person who may be less mobile, less verbal and less able to hear and understand,” Dr. Moore explains. “The planning helps diminish the emotionality in the situation.”

Tailor the Celebration

“Caregivers must be willing to adapt to the condition of the person with dementia,” says Dr. Ethelle Lord, a pioneer in Alzheimer’s coaching. “If people with dementia still enjoy opening gifts and seeing all the decorations, then go for it. If they no longer recognize the decorations/gifts, simplify their celebration.”

Tailor their holiday to meet their needs, while finding ways to honor your own holiday traditions.

Find Comfort in Memories

“Many people with Alzheimer’s can relate to the sights, sounds, and aromas of the holidays,” says health and lifestyle expert Stephanie Stephens. Stephens felt her mother, who had been diagnosed with Alzheimer’s, still knew that “something was special” during the holiday season.

For Stephens, the holidays brought forth a mixture of joyful and sorrowful emotions. She comforted herself by remembering the many Christmas mornings of her childhood. She reviewed old photos from holidays past and held on to the memories, cognizant that those days were gone and this was now.

“Cherish your memories and find comfort in the spirit of the season,” she advises.

Take the Party to Them

“If your relative with dementia is in a long-term care home and it’s difficult for them to move about, take the party to them,” suggests Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide.

Decorate their room in a festive manner. Reserve a private dining area or lounge in the care facility and invite friends and family over to celebrate.  Or encourage family members to visit in small groups over the holiday weekend, bringing food, stories and presents to enjoy.

*****

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. For a signed copy, contact Rainy Day books:  913-384-3126

Please learn more from and about these wise people.

Dr. Ethelle Lord  www.Remembering4You.com
Stephanie Stephens  http://mindyourbody.tv
Eleanor Feldman Barbera, PhD  http://www.mybetternursinghome.com