Please God, Please, don’t let me be normal!”
When I was growing up, my friend Susan and I often chanted this line from the Fantastiks. For us, normal meant mundane and we envisioned ourselves living daringly on the creative cusps.
During my time as a family caregiver, I often yearned for more of that mythical “normal.” Yet, I also wanted to be connected to my creative spirit. These are some of the words of wisdom that I used for infusions of inspiration. I’d love to hear from you: what quotes keep you afloat?
“Be recklessly generous and relentlessly kind.” Pam Grout
“It’s never too late to be what you might have been.” George Eliot
“May all beings be happy. May all my thoughts, words and actions contribute in some way to the happiness of all beings.” Lokah Samasta Sukhino Bhavantu:
These two quotes remind me to open my heart and dream.
“My great hope is to laugh as much as I cry; to get my work done and try to love somebody and have the courage to accept the love in return.” Maya Angelou
“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” (Mark Twain)
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
As a caregiver, Martha Stettinius, often felt invisible. “Family members, co-workers, and society in general don’t know what we do all day long,” she says. She also felt overwhelmed when her mother, who was in the early stages of Alzheimer’s, moved in with Martha and her family. “I quickly realized I needed outside support,” Martha says.
Writing the Worries Away
Writing her thoughts on scraps of paper helped her clear her head and face her day. She began attending a group that focused on “writing through the rough spots.” The group provided a safe venue for detailing her changing relationship with her mom.
“When I read my stories aloud to the group, so many people related to my situation,” Martha says. “It was comforting to share my feelings and hear that people identified with me.” That group was a catalyst for Martha; she began writing about her journey with her mother, creating a moving story called “Inside the Dementia Epidemic: A Daughter’s Memoir.”
Reaching Out and Strengthening Self
Martha also reached out to support groups and elder care counselors.
“We’re all vulnerable,” she says. “Asking for help is not a weakness, it’s a sign of being human.” Martha and her mother were both fiercely independent. When they let go of past conflicts and understood that they needed each other, they experienced a deep love that was very healing. As part of her goal to stay connected with her mom, Martha practiced slowing down and being in the moment. She learned to appreciate the simple pleasures: looking at flowers together, listening to music, making eye contact and communicating without words. She’s also realized that aging is about connecting with others. “Hopefully, we can all create networks and friendships that will sustain us as we age,” she says. “Aging well means not only staying active but remaining accepted and valued members of the community.”
For more information on Martha, please visit: http://www.insidedementia.com/ Here’s a review I wrote of her wonderful book: Reading Inside the Dementia Epidemic is like taking a fascinating journey with an insightful friend. Martha Stettinius captures the intense emotions, the wild confusion and uncertainty, the flashes of anger and worry, the spills of humor inherent in the family caregiving experience. She also describes the unfolding personal growth and deepening connection she experiences with her mom. This is a love story to her mom and to all those who are on the caregiving journey. As I read Martha’s meaningful book, I felt enriched, connected and informed. I highly recommend her book for any reader.
“Mrs. Fogel, you are forgetting stuff all the time,” one of Evianne Fogel’s Job Corps students told her.
Evianne was 62-years-old and she had sensed something was amiss. But she didn’t know that her fellow teachers had been covering for her. She didn’t realize that some of her behavior in the classroom was not appropriate.
“They were gentle with me when they told me I needed to quit teaching,” she says.
Her doctor’s visits confirmed she had serious memory issues. She sensed the bitter truth before the doctor told her: she had Alzheimer’s Disease.
Learning How to be Home Alone
Teaching was a huge part of her life. Evianne was a pioneer in working with disadvantaged children and she’d won national notice for her innovative ideas and techniques. She’d traveled the country setting up Job Corps education programs.
Suddenly, instead of having a fascinating job with engaging co-workers and challenging students, she had the four walls of her Cincinnati living room.
“When you’re working all the time, you fantasize how wonderful it’s going to be when you retire,” Evianne says. “But at first, it felt like death for me. I’d sit on my couch and amuse myself by seeing the patterns in the stucco walls. I felt I was put in a chamber with no one else around me. I was used to working and I didn’t how to be in a house all day long.“
Finding Grace in Every Tree Branch
Evianne has a supportive husband who tried to help her adjust. At first, she felt angry and sad. Then, she tapped into her innate resilience.
“I have a sense of higher power,” she says. “I pray and I do feel like there is grace and forgiveness; I think it’s in every tree branch, if we are willing to receive it.”
Evianne had to learn to be alone. It was a difficult moment-by-moment, day-by-day lesson. She practiced talking walks and doing yoga at home.
She also poured more time into her music. She adores playing the piano and volunteers one day a week, giving music lessons. And she’s started on the book she’s always wanted to write, about the amazing inner city children she’s been honored to teach.
Evianne views this time as a gift. She knows she repeats things; she is easily lost and often forgetful. But she is embracing this journey as a chance to deepen her spiritual connection with her higher power and with herself.
For me, part of being a care partner is letting go of worry and control and being open to intuition and flow. Here is a story from my life where I almost didn’t notice I was “in the flow!” Has this ever happened to you?
Opening to Answers
“Some people think it’s holding that makes one strong — sometimes it’s letting go.” -Unknown
Driving to the writer’s conference, my hands were sweating and my throat was tight. I had given workshops before, but I felt very nervous about this one. What if I had nothing to say? What if nobody learned anything? What if they looked at me with bored and indifferent eyes?
As I drove down 55th street, I thought, “You have prepared and you are going to do your best. Now it’s time to ‘let go and let God.’” I took a deep breath and felt a little better.
Then my inner worrywart boomed, “You could have tried harder, practiced more, done more research. You don’t have one original thing to say.” By the time, I pulled into the parking lot the steering wheel was damp with my sweat.
The conference was held in a mid-town church and the lobby was bustling with people.
“Your room is down the stairs and to your right,” the woman in charge told me.
I walked down the stairs and to the right. I saw a bathroom and a coat closet. I opened one door into a maintenance room, stacked with toilet paper and paper towels, brooms and mops. Then I noticed another room: tucked into an obscure corner — it was a small chapel. I walked in, taking in the serenity, the rich maroon color of the chairs, the soothing pattern of the stained glass windows. I felt calm and centered in this room. I tiptoed to the pulpit and stood behind it, like I had something holy to say.
Then I realized, I was going to be late for my class, Frantically, I retraced my steps, but I couldn’t find any room large enough for a class. I raced upstairs and found the woman again.
“I can’t find my room,” I told her. “There’s only a chapel in that area.”
“That is your room,” she said, “You’re teaching in the chapel.”
I walked back down slowly, smiling all the way.
My prayer, to let go and let God, had been answered in a most concrete way. I had almost been too busy worrying to notice.
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.
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.
“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
Normally, you can put my friend Vicki Stoecklin in any city and she will easily get her bearings. From Paris to Dubai to Marrakesh, Vicki is used to working in and making her way around foreign countries.
So, at age 58, when she started getting lost in her own city, she knew something was seriously wrong.
But she was caught off when the neurologist said bluntly, “You have dementia.”
“What am I supposed to do?” Vicki said.
“Live your life,” he said.
Learning to Live with Dementia
Initially, ”living life” was a huge challenge. She had trouble remembering where she’d put things; her feelings were disoriented. She could no longer drive and or do simple math. Her vision played tricks on her: she saw black holes where there were none. And she felt isolated from her community and friends.
But Vicki had a wealth of inner strength and resources. When she told me about her spiritual practices, I was inspired and moved. Here are a few of the ideas she uses to center and care for herself.
“I learned to have compassion for myself,” she says. “If I’m having a hard time concentrating on a book, I stop and do something comforting, instead of pushing myself.”
Vicki enjoys contemplating her grandmother’s hand made quilt, which hangs on the wall of Vicki’s meditation room. “She probably had Alzheimer’s when she stitched those squares together,” Vicki says.
Inviting out the Inner Artist
Vicki uses crayons, watercolors, and colored pencils to explore her own artistic process.
“My depth and visual perception is off, so my work is abstract,” she says. “I also find it meditative to color labyrinths and mazes.”
Opening the Heart to Spiritual Texts
Vicki has a number of trusted books she calls upon.
One favorite is Peace in the Storm: Daily Meditations and Prayers for Those Affected with Chronic Illness.
“This book has been a great support to me,” Vicki says. “It’s about finding your relationship with God during the challenges of ongoing illness.” Another book that spoke to Vicki was Proof Of Heaven by Eben Alexander, a neurosurgeon who writes about his near-death experience. She also frequently reads Psalms.
Praying With and For Others
Vicki has a small box that she puts little prayers in for her grandson and her daughter. She has become a chaplain at her church and often prays for others. She also finds comfort in using the 24-hour prayer service at Silent Unity
Documenting Her Life Story
She has created two memory books — one for her work and one for her life. “These books are also reminders of the many happy memories over my lifetime,” she says.
Q 4 U
What are some ways you incorporate spirituality into your life?
If you’d like to contact Vicki, you may email her at Vicki firstname.lastname@example.org
All my life, I had admired owls in zoos and animal parks but I had never seen one in nature. This bird was resting on a branch of our giant oak tree only 15 feet away from me. I stared in awe as he lifted his claw and scratched the side of his face, then swiveled his head from side to side and ruffled his feathers. I ran upstairs to get my partner Ron and together we watched the owl like he was an award-winning documentary.
“I have to get back to work,” I told Ron and he nodded. We both returned to our home offices but it was hard to concentrate knowing such a powerful bird was nearby. We looked up owls on-line and learned they represent wisdom, intuition, and magic. One person wrote, “Owls give us the power to see that which is hidden to the naked eye.”
Drinking in Every Movement
Already, we were under the animal’s charismatic magic spell. Every 15 minutes I took a break to commune with the bird. Once a butterfly fluttered around the owl’s head and the owl followed its movements like a child would watch soap bubbles. Every movement was interesting to me. The owl slept; with its great eyes hooded its face seemed empty. Upon awakening, it stretched its wondrous wings (a wing-span of almost four feet, our bird book reported) and preened. I gazed at the owl and the owl stared at me as if looking deep inside my soul.
During the course of the day, several friends and neighbors came over to view the winged visitor. They were as excited, mystified and awestruck as we were.
As I marveled at the beautiful brown and white patterning on the owl’s chest, I remembered my first glimpse of such a creature: at a pottery store in Pigeon Forge, Tennessee. I was 14 when my family vacationed at a friend’s cabin in the Smoky Mountains. One day we went into town, ate at a fried chicken restaurant and toured the pottery factory. My brother and I were each allowed to select one item from the seconds’ table and I chose a small Barred Owl. I loved the whimsical, serene and profound look on the figurine’s face. Though I had saved very few things from my childhood that souvenir was still with me. Miraculously, I knew right where it was. I walked into the living room and took the small clay object off the mantel. I held it in both hands and closed my eyes, hoping for a profound insight or mystical moment.
None came; just the special joy I always feel in the presence of birds.
Appreciating the Beginning and the Ending
That evening, before we went out to meet friends, Ron and I peered through the kitchen window and said goodbye to our owl.
“We hope we see you tomorrow,” we said.
Early the next morning, I ran breathlessly to the kitchen. The tree was empty; the owl was gone. My sense of loss was quickly replaced by a feeling of gratitude. We had experienced the miracle of winged wisdom and I knew that owl would be with me for a long, long time.
The Daily Challenge For Caregivers and All of Us: Finding the Moments
That Friday it was easy to notice the perfect moments. Other days, it’s more complicated. Part of my creative challenge to myself is to notice the magic in every day, even a day that’s prone to mundanity or challenges.
How about you? How do you notice the gifts in each day? What are some of your perfect moments?