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.”
“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.
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.
“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.
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.
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 with Dementia Feel at Ease during Holiday Gatherings
- When you’re in a group, help the person 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 has 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 seasons filled with grace, gratitude and generosity.
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.
Q 4 U : How have you adapted your holiday expectations?