“How long have you been together?” the younger couple asked Ron and me.
“Twenty-two years,” we answered.
“Wow!” they said. They’d been in love for seven months and our decades-long romance must have seemed exotic and slightly unbelievable.
“What are the secrets of a good relationship?” they asked. “Please share your wisdom.”
First, Ron and I basked in the idea that two people believed we possessed actual wisdom! Then we shared our insights.
How We Learned about Love
Our insights came from growing as individuals and as a couple during our wonderful long relationship and from earlier relationships that had helped us become our true selves. We also learned from watching our parents maintain their relationships in the face of dementia.
When Ron’s father Frank was in a memory care unit, Ron’s mom Mollie told her husband, “I love you so much.” Frank replied, “Not as much as I love you!.” Those were some of Frank’s last words and that sentence stayed with Mollie through and beyond her grieving.
During my growing up years, my father was circumspect in declaring his love for Mom. But when she slipped into dementia, Dad showed me what a true romantic he was. He treated her like he was courting her; he showered Mom with compliments and kisses and frequently he expressed his love for her. Even when she could no longer talk, she still enjoyed her favorite foods—he faithfully fed her sliced strawberries and chocolate candies.
Love Me Tender, Make Me Laugh, Always Have My Back
My parents were my role models and I also learn an enormous amount from the couples I interview every week for the love story column I write for the Kansas City Star Magazine. Here are some of the qualities people most love about their life partners and spouses.
Loves me just as I am
Takes care of me/Always has my back
Makes me laugh
Shares my values/ Complements me
Works hard/ Is honest and reliable
Always puts other people first/ Always puts me first
Inspires me to be better/ Appreciates me
Love Lights the Way
Some months ago, Oprah had author, visionary and cultural mid-wife Jean Houston on her TV show. “What do you wish people knew?” Oprah asked Jean.
“I wish people knew how powerful love is,” Jean answered.
That was one of the grandest lessons from my journey with my mom through her dementia: the power of love. Her love lasted all her life, far beyond her memory of things and people. Her love was a spark that lit up her life and mine.
“Where there is great love there are always miracles.” Willa Cather.
I am always looking for wonderful love stories and I found this one when I was visiting the blog of one of my favorite writers, Louise Penny. I went to her site because I had just finished reading her book, A Fatal Grace, and I was feeling withdrawal. Plus, I knew her husband was living with dementia and I thought she might have some insights. She has some deep insights and she has generously given me permission to share them with you.
From Louise Penny:
Michael no longer knows my name. And now needs help eating. He can no longer walk on his own, and cannot read, or do puzzles. He barely speaks. He sleeps a lot, and I try not to take it personally, as though I am not doing a good job stimulating him. But, poor guy, when I try to stimulate him, by singing or dancing or finding games that might interest him, he looks at me, smiles. And falls asleep.
He remains the happiest man I know. Smiling at everyone. Reaching out for people’s hands.
And people are so very, very kind. I could never have predicted that when people visit, the first thing they do is go over to Michael, introduce themselves even though he’s known most for years, and chat. He loves it.
And then he falls asleep.
At bedtime, when he is finally and gratefully horizontal, I whisper in his ear. Something that came out of a horrific event in 2014, when Corporal Nathan Cirillo was shot and killed by a gunman on Parliament Hill, in Ottawa.
As the young man lay dying, men and women ran over to try to help him. One woman, Barbara Winters, knelt beside him and whispered in his ear that he was loved. That he was a good man and a brave man. She just kept repeating that.
And now, every night, after I turn the light out, I whisper in Michael’s ear that he’s a handsome man. A kind man. That he is thoughtful and funny and he makes everyone around him feel special. I whisper that he is loved, and he is safe. And then I kiss him good night. And he smiles.
Then I whisper to myself, “You are braver than you believe, stronger than you seem, and smarter than you think.” #
To learn more about Louise Penny and her books and her ideas, please visit https://www.facebook.com/louisepennyauthor
Or subscribe to her newsletter at www.louisepenny.com
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
I set my briefcase on my gritty kitchen counter and traced the raised gold lettering on the thick ivory card. “You are Invited to a Holiday Cookie Party,” the note read. The invitation was from a fascinating, creative, high–powered executive I had met several months ago. I was surprised and thrilled that she had invited me to such a gathering.
Each woman would bring a batch of home-baked cookies, she wrote. We would then get to sample all the cookies and bring a bag of treats home to our families. I adored the idea of getting to bring my teenage daughters such an array of home-baked sweets. I envisioned a room filled with charming baskets of star-shaped sugar cookies, generously topped with red or green frosting. I imagined a jolly basket of Santa cookies and a fragrant ginger-scented array of reindeer cookies. I fantasized about thumbprint cookies, shaped like snowflakes and gooey with jam, and about silky buttery sandies melting in my mouth. And…
Then I realized the implication; these holiday cookies would not only need to be beautiful, creative, and delicious, they would need to be presented in festive and unusual ways. I had never really made anything other than the occasional clumpy chocolate chip, peanut butter, or oatmeal cookie. Why hadn’t my mother been a more glamorous baker, I fretted, as I rummaged in the refrigerator for something to make for dinner. She only made the plainest of cookies—date crumbs, peanut butter, and chocolate chip. As I boiled water for pasta and heated up the jar of marinara sauce, a number floated into my head and I dialed it.
“If I go to this party, will you help me with a recipe and a cute idea for presenting the cookies?” I asked my friend Judith, who was graced with five-star baking abilities.
“Of course,” she said. Judith’s aplomb would fit right in at such a gathering. Briefly, I wondered if she could attend in my place and just deliver my treats to me.
I told my daughters the good news—in several weeks we would have our own private holiday cookie festival. Since our sweets were usually made by some giant corporate entity, they were ultra-excited.
A week later, I received a thick packet in the mail. Judith had selected a number of “easy” recipes for me. I smiled as I looked over the pictures of adorable cookies with a cute holiday twist. I frowned as I read through the baking instructions; each cookie demanded its own specialized pan, gourmet tool, thermometer, or esoteric ingredient.
As the day of the cookie party neared, I had no recipe, no cookies, no plan, and nothing good to wear.
That night at dinner, I said, “I don’t think I can go to the party.”
“Why not?” Sarah said sharply. She was thirteen and took promises and plans very seriously. Plus, she had a highly sophisticated taste for sweets and was looking forward to expanding her repertoire.
“I can’t just walk in carrying a paltry tray of blobby looking chocolate chip cookies.” My throat constricted and I wished I were a mother who could whip up a butterscotch soufflé from ingredients that just happened to be in my kitchen cabinets.
“Why not?” my older daughter Jessica said. Even during the holiday season, she kept to her black-themed wardrobe. She looked Gothic and serious as she said, “Everyone else will be all silver bells and fancy sprinkles. You will represent the good old- fashioned approach to the holidays; your simplicity will be refreshing.”
I took a breath and considered her words. If worse came to worse, I could always pretend I never saw those cookies before in my life.
That evening, my daughters and I made chocolate chip cookies and put them in a tin lined with aluminum foil. In honor of the season, I unearthed a shiny red bow to top the tin.
Walking into the party was like walking into a fairyland. Christmas lights lined the windows and a sparkling tree spread its branches into the living room. The dining room table looked like the December cover of Gourmet magazine. Stars, hearts, Christmas trees, snowmen, all the icons of the season were glowing with icing and sprinkles. Some cookies were nestled in hand-made wreathes. Others shone from star-shaped or tree shaped boxes. A miniature set of reindeer surrounded a bejeweled fruitcake. A galaxy of colorful star-shaped cookies decorated a tiered silver-server. I admired each display while looking for a quiet corner where I could tuck in my tin of chocolate chips. I finally settled them between candy cane cookies and gingerbread Santa’s.
My hostess offered me champagne and the conversation flowed. Then she announced, “It’s time to gather the cookies.” She had a large silver gift sack for each of us and encouraged us to take several of each cookie. As I toured the table, I sneaked a look at my humble confection. What if no one took any? What if I had to bring the whole batch home? What if… The doubts daunted me as I filled my sack with delectables.
“Who made the chocolate chip cookies?” someone asked. The room quieted and my breath quickened. As the silence spread, I finally said, “I did.”
“What an interesting idea,” someone said.
“I never would have thought of it. It’s comforting. These cookies remind me of my mother and home.”
I smiled as I put three Santas in my sack and headed for the reindeer.
That evening my daughters and I had a magnificent holiday feast, consisting of cookies, cookies, and cookies.
“Here’s the strange thing, Mom,” Jessica said, as she leaned back, sated. “Your cookies are really just as good as any of them. Not as cute, but just as delicious.”
“More delicious,” Sarah said.
I smiled, thinking that about my mom’s cookies when I was growing up. Maybe there was something about the plain old recipes offered in the plain old way, so sturdy, so unglamorous, and yet so deliciously like coming home.
Here’s to a sweet holiday season!
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
The next three blogs are dedicated to the holiday season. This story just appeared in Chicken Soup’s new Merry Christmas book. Here’s to each of us sharing our light in the world.
The Latke Legacy
“This is not like Mom used to make,” I had to confess. It was my first Chanukah of being the latke lady. My mother’s potato pancakes were crisp, flat, and nicely rounded. The texture was smooth but not mushy and they shone with just a glint of leftover oil. I had been a latke apprentice for years, pressed into service by Mom. I was a key cog in the labor pool, peeling the potatoes, then wearing out my arm rubbing them against the stainless steel grater, using the side with the teardrop shaped holes. My mother must have known that enlisting my help would keep me from pestering her to make potato pancakes for other occasions. Only once a year did these delicious patties grace our table, when we lit the first candles of Chanukah and began the eight-day Festival of Lights.
My debut latkes were pale and greasy, like something carelessly served in a late night diner. I myself was pale and greasy from the stress of trying to coax the patties into cohesion. First they had drifted apart—too little flour. Then they had turned cliquish, glomming into militant lumps. When I had finally worked through the potato/flour/egg ratio, I bumped into the complex dynamic between potatoes, oil and heat. For three hours I had struggled to create this barely edible token of tradition.
Years passed. Every Chanukah, I faced a different challenge. The oil was too cold, too hot, not enough, too much. The texture was too coarse or too fine. The grated onions were too strong or too weak. The latke mixture was too thin then too thick. Every year, I hoped for pancakes that tasted like Mom’s and got instead grey leaden latkes. My daughters, who peeled and grated potatoes with me, examined my finished product warily, smothering it in the traditional applesauce and often taking only a few bites. I worried that when they grew up, they would forego the holiday tradition and turn to something simpler and more delicious, like frozen hash browns. I felt a sense of failure as a mother and as a tender of the tradition. My mother had shown me how to make the latkes: why couldn’t I measure up and instill the potato pancake protocol in my progeny?
Then my daughter Sarah, fresh from college and a first job, moved back to town and offered to help me prepare the holiday meal. She was a food channel devotee and had already orchestrated several dinner parties, creating the menus and cooking all the courses. She understood the relationship between vegetables, oil and heat.
“Mom, I think you need to squeeze more water out of the potato mixture,” she advised. “Maybe you could use a food processor to grate the potatoes. What if you used two pans instead of trying to cram so many into one?”
I stepped back and she stepped forward and under her guidance, we prepared the latkes. As I watched my daughter mastermind the cooking, I realized that tradition could be kept alive in many ways. My daughter was starting the tradition of “doing what you’re good at,” giving me a chance to forget my own culinary challenges and applaud her self-taught abilities.
That Chanukah night, everyone at the table oohed and ahhed at the sight of the latkes. Each one was golden brown and crisp, free of extra oil. I didn’t even have to secretly search and pluck out a “good one,” like I had been forced to do in previous years.
I looked around the table of friends and family and took a bite of my daughter’s latke. My mouth filled with the crunch, flavor and intriguing texture of a of well-fried potato pancake. This was the latke I had been waiting for; just like Mom used to make. Only better.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Imagine sitting down for your favorite growing up meal. The sight, taste, and aroma of those hallowed childhood dishes would stir up a cornucopia of delicious memories.
Recently my friend Elizabeth cooked such a meal for her husband Charlie, who is living with early onset dementia. Charlie grew up in the 1950s, so Elizabeth bought a period cookbook. She and Charlie read through the recipes to see which ones he resonated with.
“I will cook your favorites and we’ll invite a couple of your old friends from high school over for dinner,” she told him.
Elizabeth is a terrific cook and Charlie loved this idea. They analyzed the potential entrees, Beef stroganoff, chicken Cacciatore, meatloaf, but Charlie kept returning to one page: the recipe for Johnny Marzetti Casserole.
At first, Elizabeth demurred. As an accomplished cook, she didn’t like the idea of serving guests such a simple meal. But Charlie was persuasive, so she bought ground beef, canned tomatoes, cheese, and elbow macaroni. She cooked up a big pan of Johnny Marzetti, otherwise known as goulash, American Chop Suey, or macaroni and beef.
Charlie and his friends went wild over the food and laughed as they shared memories of school, the neighborhood, their families, and favorite foods. The cookbook, the meal, and the cook were a huge success.
Next on Elizabeth’s list: take pictures of Charlie with his favorite dishes and paste them in a scrapbook along with the recipes.
What are some of your favorite childhood meals?
For me, the desserts were most important. I adored cream horns, Mrs. Smith’s Lemon Icebox Pie, and Mom’s brownies and chocolate cake, particularly the icing. We still include Mom’s memorial brownies, courtesy of my brother, Chef Daniel Barnett, at family gatherings.
This blog is a tribute to my father, an honoring of my amazing brother, and a chance to share one of my dad’s favorite jokes. I welcome your favorite jokes and I wish you a lovely day of celebrating good fathers. Warmly, Deborah
THE JOKES ON HIM
It’s the fifties. My brother Dan and I sit opposite each other at the Formica kitchen table; my mother and father sit on each end.. We are eating Swiss steak, mashed potatoes and mushy-looking peas. My father is telling us about this sales call he had today. As he begins the story, Dan and I listen carefully. We want to see who can be the first to figure out if it’s regular boring adult conversation or a joke.
“So the man says to me,” my father says.
I screw up my mouth and nod at Dan. He nods back. It’s definitely a joke.
Some fathers like to train their kids by tossing them balls, wanting them to hone their catching and pitching skills. Dad tossed us one liners and puns, watching to see how quickly we caught on.
“My brother called the other day,” Dad would say and we all believed that Uncle Lou really had called until we were socked in the stomach with the punch line.
As we got older, Dan and I learned to keep our faces deadpan, to give my father no hope, no clue that we knew he was trying to be funny. We learned to sit still for several seconds after we had been surprised by a punch line and then, dissolve into spirited laughter if it was really funny or loud groaning if it was really terrible.
Despite all this exposure to fabulous stories, great deliveries and rollicking punch lines, neither my brother nor I are joke tellers. I like to throw spontaneous one liners into conversation, but cannot remember a long involved story. My brother has always been laid back, offering at most an occasional bon mot.
Fast forward to the nineties. We’re at a family reunion and it’s raining for the third day in a row. Twenty of us are crammed into my parents’ motel room eating a picnic lunch off drooping paper plates. My nephews squirm around, playing with various plastic weapons; my daughters and my niece sprawl languidly on one of the queen-size beds. Mom and I and a couple cousins camp on the other bed. Dan sits in a chair, reading a Richard Ford novel. My father paces in front of the television.
The noise in the room builds and my father stands still, then smoothes his shirt. I can tell from his posture that he is going to tell us a joke. My father does not silence the room. He does not have to. Dan and I are always alert for the first sign of our highest role: audience. Dan looks over at his two sons and cocks an eyebrow. I look at my daughters and nod once. They instantly quiet.
“This rain reminds me of the time I took my dog to the movies,” my father says.
Dan and I grin at each other. There is no dog in the history of our family.
“This dog was smart and loved for me to sneak him into the movies.” My father’s voice is so smooth and lulling, I almost believe this dog was part of our household. “One day I got caught and the manager made me promise to never bring that dog to the movies again. But one rainy night, I couldn’t resist.” He looks to Mom for confirmation and good sport that she is, she smiles back. “I sneak the dog into the movies. As we are leaving the theater the manager pushes his way up to me, pulls aside my jacket where the dog is hiding, and says in an accusatory voice, ‘So, how did your dog like the movie?’
‘ Oh pretty well,’ I answer. ‘But he liked the book better’.”
For a moment, the room is still. Then my nephew slaps his thigh and we all dissolve into laughter.
“And since we’re talking about dogs,” Dad says, taking his rightful place in center stage, between the television and the dresser. “Our next door neighbor has the most obnoxious dog.”
The jokes continue, each grander than the next.
Right after the one about the woman and the dry cleaners, my brother suddenly says, “I had this experience with my shoes the other day.” His voice is calm and plain. I smile, figuring the joke telling is over and we are moving into general conversation. Then I listen more carefully.
Dan tells a long and complex story– decidedly a bold mood in this charged atmosphere. My father has a patient expression on his face. My brother is articulate and calm, no histrionics, no mugging for the crowd. He may simply be telling an interesting story. I pray, “If he’s telling a joke, let him tell it well.” Dan stumbles over a word and I wring my hands. I feel like I am watching a tennis player’s first time on the court in an intense competition. I want my brother to win.
And then, Dan delivers the punch line. It’s smooth and elegant; sliding into us so unexpectedly, so easily that even Dad is caught off guard. Even Dad has that moment of hesitation and that flash of realization before he bursts into laughter and applause.
The applause dies down and my father segues right in. Dan folds his hands, content. I smile at him. I have read different accounts of coming of age. Yet here is one I have never seen before. My brother, emerging from years of quietly being in the audience, elegantly seizing the stage and then graciously giving it back. He has been heard. He has let us know, he is his father’s son.
“It’s stopped raining,” one of the boys says. “Let’s go out and play.” With a great roar, the boys take their swords and rush out to the nearby playground. The girls gather their purses and go to the quick shop for a diet drink. The cousins go off to do some shopping.
The room is quiet now, just my dad, my brother, my mom and I.
“I had no idea that you were such a great storyteller,” Dad says to my brother.
My brother shrugs. “After a while,” he says, “you catch on.”
Psychologist Don Wendorf wrote Caregiver Carols: an Emotional, Musical Memoir to help other caregivers cope with their feelings and to help himself. Writing was cathartic for Don and it offered him insight and understanding into his caregiving journey. Don says, “I always encouraged my therapy clients to keep a journal and I have now experienced for myself just how helpful this is. The whole endeavor of creating something is very life-giving and essential.” Here are a few tips for caregivers from Don:
Take care of yourself the best you possibly can. Do as much as you can that nurtures your body, soul and mind. Exercise like a fiend. Go out with friends. Do creative stuff. Feed your faith. Avoid burnout at all costs. Seek out, accept and ask for even more help than you think you need or want.
Reach Out for Feedback and Support
Rely on people you trust to give you feedback about how you’re doing and if you’re looking burned out. They may be able to see what you can’t or won’t. Talk to other caregivers who know this path and use local or online support groups. Express your feelings to others and let them support and comfort and care for you. Man, it feels good.
Let go of perfection and forgive yourself and your caregivee when you goof up, which you ARE going to do.
Explore and Express Your Emotions
Look beneath your anger and see what layers of emotion it may be covering up: anxiety, ambivalence, fear, sadness, resentment, helplessness, hopelessness, depression, remorse, guilt, regret, loneliness, neediness. I think the biggest for me was GRIEF: I was slowly losing the love of my life. Express your feelings. There is absolutely nothing unmanly about it and you are then less likely to use anger as a blanket emotion. So, Caregiver Guys: Man Up!
Here is a story celebrating mothers from my book, Love in the Land of Dementia.
My friend Karen gives me a gift: she says, “Tell me about your mother.”
We are sitting in a quiet mid-afternoon café and I let the question sink into me.
When friends occasionally ask me, “How is your mother doing?” I have different answers, depending on the situation. If we are in one of those conversations that are like confetti in brisk wind, I say, “She’s okay.”
If we are sitting across from each other and my friend is looking right at me, I answer, “She’s pretty deep into Alzheimer’s.”
“Does she recognize you?” she might ask.
“No, but she may recognize I am a person she likes,” I answer.
That usually ends that conversation.
But “Tell me about your mother,” is an invitation I don’t usually get.
“What would you like to know?” I ask.
She stirs her iced mocha. “Whatever you want to tell me,” she says softly. “I would like to know about her life and her interests.”
Since my mother has been in the nursing home with Alzheimer’s, I have seldom talked about the person she used to be. Occasionally my father and I reminisce about family vacations and outings. I sometimes ask Dad questions about our growing up days and the early days of their courtship. But I rarely think about the woman I knew all my life, the mother, grandmother, artist, gardener, compassionate friend, avid reader, bird-watcher, early morning walker, lemon-meringue pie baker. That woman is gone and I have spent a lot of energy learning to know and appreciate the woman who now commandeers her body.
As I consider what I want to tell Karen, I remember visiting my mom’s best friend, Bel, in California when I was a teenager. Bel, who was spunky and adventurous in a way that seemed so different from my conservative mother, drove me from Berkeley to the small resort where I would work as a chambermaid for the summer.
“Do you know how I met your mom?” she asked me, as we drove down the winding roads, past fragrant stands of eucalyptus trees.
“In Iceland, during the World War II,” I said. I had heard stories of the two of them taking a break from their work in the hospital by skiing, then stopping for a soak in a hot springs.
“No, we met earlier in Chicago. We were both nurses working the 12-hour night shift. The hospital had a room with a couple of bunk beds so we could rest on breaks. One night I walked in there and heard the most heart-breaking sobbing. It was Frances, crying her eyes out. I asked her what was wrong and she said, ‘Nothing.’”
I smiled. That sounded like Mom, never wanting to admit anything was wrong.
“Then I asked her again and she sobbed out that her husband Sam had died six months ago from pneumonia. She was so sad she didn’t know if she could go on. A bunch of other nurses and I were going to Florida for a short vacation and I persuaded your mother to join us. But as it turned out, we never went; a week later I decided to join the Army and I encouraged her to come along. We’ve been best friends ever since.”
When I heard this story at the age of 17, I was too young to fathom my mother’s grief and despair. By the time I told Karen the story, I had some sense of what my mother must have gone through.
“Your Mom was really brave, to serve in the Army during wartime,” Karen says.
I feel a little swell of pride. Mom’s tales of traveling in the darkest night on the troop ship, with bombs falling nearby, were so familiar I had never considered her bravery and courage.
Now I tell Karen how my father, encouraged by Bel’s husband, wrote Mom a letter, telling her he was ready to marry a nice Jewish girl. Was she interested? Was she available?
After some correspondence, Mom surprised herself by agreeing to meet him in Chicago. At the end of the week, my father asked her to marry him. She considered the offer for three weeks and accepted. Their whirlwind romance was fueled by practicality.
“What a great story,” Karen says. “Your mother must be an amazing woman.”
Sparked by Karen’s interest, I let myself feel my love for my mother as she used to be. I am in tears by the time our conversation ends.
“Thank you for asking me about my mother,” I say to Karen.
“Your stories make me want to call my own mom and hear her stories again.”
As I drive home, I think of more “mom” stories to share with my children and my brother. I see myself, along with my brother and father, as the carrier of my mother’s sacred legacy. I imagine myself tenderly fanning the embers, adding dry leaves and crumbled paper, creating a blaze with each memory. I realize I don’t have to give up Mom’s old self: I can be her historian and her scribe, carrying her stories with me, and making sure they live on.
I wanted to share this story from Love in the Land of Dementia, a tribute to my mother and her beautiful capacity for wisdom. Here’s to embracing the divine flow of life.
Let It Be
For the first time, my mother cannot really help prepare our Seder meal. She wanders around the kitchen, pausing at the counter, the stove, the table as if to collect something lost.
“What was I doing?” she asks.
“Setting the table,” I say.
“How many people are coming?”
“Ten,” I say, spilling the spoonful of oil in my irritation. An old football cheer floats into my mind, “First and ten, do it again. Do it again.” And again. Mom has already asked me these questions several times in the last 10 minutes.
When Mom and Dad drove up two days ago, Dad’s face was tight and he went straight to the guestroom to take a nap.
“Sometimes I wish I were hard of hearing,” he told me, later that evening.
Mom’s speech is like an old record player with a needle that refuses to leave its groove. The simple anchors of life, the who, what, where, and when of things, often elude her.
“Did you remember the macaroons for dessert?” she asks, a fork in hand.
“Yes,” I say, again. I crack an egg and have to scoop shell out of the bowl.
I stir the matzo mixture and take a breath. I have trained myself to be brisk and efficient, but now, around my mother, I need to be slow and soft.
“How many people are coming?” she asks.
“Ten,” I say, impatience pinching my throat. “Let’s take a break and go for a walk.”
I wipe my hands and look for the house keys. They are not on their usual hook in the cabinet. They are not in my purse, or lolling on the kitchen table. I feel a brief flutter of shame over the impatience I felt just this morning, when Mom misplaced her glasses case for the second time. Then I feel a stab of fear: am I too losing my mind?
“Have you seen my keys?” I ask my daughter, who comes breezing through, searching for chocolate to inspire her mid-term studying.
She stops, Hershey’s bar in hand. “They’re right in front of you, Mom,” she says, pointing to a huddled mass of metal on the counter corner. I pocket the keys and double check to make sure I have turned off the stove.
Outside, the redbuds are flowering; the dogwoods skirting newly green lawns. My mother and I walk past a closed-down lemonade stand, three broken lawn chairs,set out on the curb, and a blond, floppy-haired girl, skipping over a pink jump rope.
“It was hard when my mother died. My father just disappeared, took off walking,” Mom says. “He was a good man, though.”
I nod. I remember as much about my mother’s childhood as I do my own. The story of her mother’s death is one in a series of memories Mom has told me all my life.
We pass a woman strolling a sleeping baby and Mom smiles.
“Did you get the macaroons?”
“Yes, I did Mom.”
“Did I already ask you that?”
“Your father gets mad at me sometimes,” she says. “He thinks I’m forgetting on purpose.”
“What’s it like to not remember?” I ask.
An eager black spaniel rushes up to us.
“I start a thought,” Mom says, bending to pat the dog, “and the end disappears. If I try too hard to catch it, that makes it worse. So I let go, and eventually I get the answer. Of course, by that time, something else is going on.” Mom smiles and shakes her head. Her hair is silvery and curly; her hands like fine dried flowers; her stride crisp and full.
All weekend, I have watched her happily listen to the conversations around her, passionately asking a question, then moments later, equally passionate, asking the same question. I have listened to her stories, which have the comforting familiarity of a well-worn quilt. These stories, which sprinkled my growing-up years, are now the major part of our conversations.
That evening, we celebrate Passover with a Seder service. As the service progresses, my father tells our guests about “Dayenu,” a Hebrew word that means, “Even that would have been enough.”
“It sounds like Die-aa-nu,” he says. “You repeat it after each of the sentences I’m going to read. It’s a way of expressing gratitude.”
My mother fiddles with the prayer book and asks for the third time, “Is it time for Elijah?”
“Not yet,” my father says, his voice tense. Then he calms and begins the Dayenu litany:
“If God had divided the sea without leading us onto dry land,”
“Dayenu,” we all repeat.
“If God had taken care of us in the desert for 40 years without feeding us manna,”
“If God had fed us manna without…”
And so we follow the journey of our ancestors, promising we will be satisfied. With whatever we get.
As I repeat my gratitude and pledge my satisfaction with life as it is I think of my mother. I miss her remembering all the details of my life. I miss her knowing where the silverware drawer is. I miss telling her something I’m proud of and having her remember it. And yet, she is the living symbol of Dayenu, graciously accepting her failing mind and making the best of it.
“And now, it’s time to eat,” my father says.
My mother reaches over and pats my wrist. I see the patina of softness that burnishes her, the loving core that goes far beyond mundane daily detail. I see the woman who has loved me even during the years I wandered through a difficult wilderness.
As we sip our sweet wine and break off a piece of unleavened bread, I create my own litany:
If my mother gets pleasure out of life. . .
If she remembers who I am. . .
“This is a lovely Seder,” she says. “You did a beautiful job of putting all this together.”
I press her hand, look into her smiling face and say, “Dayenu.”
“It’s really a very simple program, but the results are unbelievable. You watch the film Alive Inside and you think those are just the reactions they chose for the camera, but we really do see instant and unbelievable results from many of those we work with.” Linsey Norton
Barrick Wilson of Wichita, Kansas, uses music to connect with his beloved wife Kristi.
Kristi showed the first signs of dementia in 2004, when she was only 60 years old. She was diagnosed in 2008 and three years later, Barrick took early retirement so he could care for Kristi fulltime. There were plenty of tough times as Kristi’s disease progressed and music helped ease the issues. Often Barrick took Kristie for a ride and they’d listen to favorite songs as they tooled along.
“Bad, Bad Leroy Brown was one of her favorites,” Barrick says.
In the afternoons, they’d sit on the sofa and listen to Golden Oldies together, both singing along. Then Barrick learned about the Roth Project: Music Memories;” (which is similar to Music and Memory) and he signed Kristi up, working with the Central and Western Kansas office of the Alzheimer’s Association.
“I purchased a boxed set of Rogers and Hammerstein’s Broadway musicals, records her parents had listened to when Kristi was growing up,” Barrick says. “I included Jim Croce and Kristi’s grandmother’s favorite hymns.”
Barrick worked hard to develop a playlist that keyed in on Kristi’s emotional memories; volunteers from the Alzheimer’s Association helped load it onto an iPod. Then Barrick had the pleasure of sitting next to Kristi and reveling in her beautiful smile when she put on headphones and heard Some Enchanted Evening.
“The music is a calming influence,” Barrick says.
Kristi is one of a couple hundred people enrolled in the Roth Project through the Central and Western Kansas office of the Alzheimer’s Association.
“Our staff offers counseling services to care facilities and to families as to when and how to use the iPod, “ says Linsey Norton, the Association’s Program Director. “We also help care partners notice behavioral cues that allow them to reach for the iPod headphones instead of the anti-anxiety medication. We are working with chapters nationwide to help them develop iPod therapy programs for families in their communities.”
Music helped Kristi when she needed to transition to a memory care unit. The staff offered her headphones and her favorite songs several times a day. Kristi got up and danced when Leroy Brown came on.
Barrick is a pianist and has also incorporated the songs he used to play for Kristi when they were dating. During their courtship, he played the piano in her parents’ living room. Now he sits in the facility’s dining room, his wife by his side, and he plays I’m in the Mood for Love, If I Loved You and My Funny Valentine. These classic love songs transcend rational thought and create an engineering marvel, a bridge that connects Barrick and Kristi.
Barrick shares this advice for care partners:
- Find out as much about the disease as you can. Read, watch videos, become friends with the Alzheimer’s Association and listen to their advice.
- Take your time putting together a playlist that will trigger positive emotional memories for the person living with dementia.
- Be prepared to join the person with Alzheimer’s in her world. It’s like living in an improv theater; you don’t know what’s coming next.
- Take care of yourself. If you need help, ask for it.