My parents liked to celebrate Valentine’s Day with dinner and dancing. Years into my mom’s Alzheimer’s journey, my parents’ love hadn’t diminished, but my mom’s capacity for going out to dinner and dancing had drastically decreased. I saw how blue my father was—one more event he had to give up, one more change in the woman he loved—and I searched for alternatives that might cheer him up. Here are five ways to make Valentine’s Day special.
Look for a favorite thing. Seek one simple pleasure your loved one might enjoy. Mom loved potato soup and chocolate and fresh strawberries. These were part of our celebration.
Nurture yourself: include your own favorite thing. Bring yourself into the celebration and include something that makes you happy. I brought foods my father and I both liked as part of our little party.
Pick several ways to express your love. Poetry, music, gifts, flowers, and photo albums—you can use any of these resources as a catalyst to talk about your feelings. Dad and I sang Mom old show tunes and love songs, music she really enjoyed. Mom adored Shakespeare; we had a couple of sonnets on hand. She and Dad had once created a beautiful flower garden; Dad brought her a single red rose.
Take joy in the simple act of expressing yourself. Being with my mom was a chance to really practice the mythical “unconditional love.” Mom couldn’t tell me she loved me. During one Valentine’s Day celebration, she fell asleep while I was holding her hand and talking sweetly to her. But there was a comfort in expressing my love and I kept on talking.
Celebrate love in all its glorious guises. During their long marriage, my father had walked into a room millions of times and often, Mom had been busy and hadn’t particularly smiled or remarked. But with her dementia came a deep dependency on Dad. When Dad walked into a room, my mother’s face lit up. My father basked in that light. The sparkle in my mother’s eyes was the new, “I love you, darling.” The light said everything my mother could no longer say.
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“I keep thinking I should do more to help Mom as her Alzheimer’s progresses,” a friend recently told me. “I visit Mom in Chicago every month but I worry that’s not enough. Yet I have my work and my family here in Kansas City. I’m torn in two and the stress is eating me up.”
It’s so difficult to be a long distance care partner. I was lucky: my parents moved close to me when Mom was diagnosed with dementia. Yet even though I was nearby, I shared some of the stresses my friend described. My stomach hurt most of the time. As I dashed around the house, getting ready to go see Mom in the Memory Care Unit, I frequently bumped into furniture. I found myself mentally drifting away during meetings and unable to concentrate when I sat at the computer to write. And even though I had wonderful, supportive friends, I often felt an aching loneliness. Later, I learned these were normal symptoms of caregiver’s fatigue.
I asked my friend Linda Moore, psychologist, community leader, and author of the book, “What’s Wrong with Me?” to tell me more about recognizing and managing such exhaustion. Here are some of her insights.
Three Areas Where Stress Screeches You to a Halt
“Your body is the early warning system,” Linda says. “But most people try to ignore the on-going tiredness, low energy, muscle spasms, unfamiliar aches and pains, and GI issues.”
Emotional and Spiritual
Often, after I’d spent hours solving problems around Mom’s care, I had a heavy feeling of disconnection and a dull anger. Nothing mattered and I felt sad, rootless, and lonely. But I kept going.
“Care partners tend to push past their feelings,” Linda says.
“Poor concentration is one common sign of stress,” Linda says. When friends say, “You’re just not acting like yourself,” it’s a cue to slow down and drink a cup of soothing tea, read a short magazine article, or phone a friend. Other stress symptoms include procrastination and isolating yourself.
Fight Breakdown with the MEE Plan
“Meditate, even if it’s just for a minute,” Linda advises.
Sit quietly, count to four as you breathe in and count to six as you breathe out. Watch your thoughts wiggle around. One minute of meditation calms you, five minutes energize you, and twenty minutes of daily meditation can center you and give you a greater sense of well-being.
“Everybody knows it works and no one wants to do it,” Linda says. Even when you’re so tuckered out that your fingernails feel heavy, movement matters. Five minutes just walking around the house or prancing around to “Dancing Queen” can ratchet up your energy. Fifteen minutes of walking can lift your mood. Even a jog up stairs or unloading the dishwasher can shift your energy.
Is a banana really as delicious as a dark chocolate truffle? Many would say no. But most would agree, the banana is better for you. Even if you often eat on the run, choose fruits and vegetables to snack on. Throw in salads, soups and nuts. And don’t forget the truffle: be sure you indulge every so often in a comfort food you really adore.
Lastly, Linda advises, “Don’t give away your personal power: ask for help when appropriate and learn to say no.”
For more information about keeping your personal power and reducing stress, visit
Dr. Linda Moore is a psychologist, author, speaker and consultant in Kansas City. She specializes in the psychology of women, stress management, and leadership.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
When I walk through the doors of the nursing home, I find my mother in her wheelchair, right in front of the medication cart, right behind the central nursing station, where nurses, delivery people, staff and family members congregate. Mom is bent over, her baby doll lying across her lap. When I walk up to her, I ratchet up my energy and widen my smile. I am preparing to clown her into a reaction.
Later my father will ask if I think she recognized me.
“No,” I will have to tell him. “She did not recognize me. But she did smile.”
The smile is important.
My hand waving and head bobbing does its work: Mom does smile, and I can tell she is in her own current version of a good mood.
“Music in the dining room,” the activity board reads, so I wheel her in that direction. An elderly man with a red and white trimmed Santa hat passes us in the hallway.
“Look Mom, there’s Santa,” I tell her.
Having been brought up Jewish, Mom never was all that enthralled with the Claus mythology and she has not changed.
A white-haired woman is in the dining room, busily setting up for the music program. Several patients are already gathered. The woman takes out a microphone, a boom box, an illuminated plastic snowman, and a small silver bell. I continue wheeling Mom down the far corridor, liking the sense of companionship I have from this movement.
As we stroll, a nurse carrying a plate of lettuce walks past us.
“She must have been a good mother,” she says, nodding at the way Mom is holding the baby. “She must still be a good mother.”
“She is,” I say.
I have never really said to my mom, “You were a good mother.”
Now I realize she was.
I can see that Mom is enjoying the ride. She loved movement when she was younger and was far more adventuresome than Dad when it came to airplanes, ski lifts, fast cars, and speedy boats. For her, biting breeze across the face was thrilling, not threatening. Until she became a mother, that is. Then she abandoned her pleasure in the heights and speed and concentrated on making sure we were slow, safe, and centered.
We roll back into the 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 from the memory care 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 smeared with butter and sprinkled with sugar and baked. 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 songs. She did not willingly go to Christmas parties. She let the holiday rush by her, like a large train, whooshing past, ruffling her hair and leaving her behind.
Now, I am singing Christmas carols to my Mom for the first time. She is smiling, though really not at me. But I am sitting beside her while she is smiling and that makes me happy. 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, nudging her, shaking a bell almost in her face, 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 nose, Mom laughs. For several minutes, Mom stays fixated on the scarlet nose, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed. Then, Thelda dances away and Mom’s face glazes back over.
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.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Twenty years ago, Jytte Fogh Lokvig found herself in a quandary. She was doing a favor for a friend: visiting the friend’s mom weekly while the friend was out of the country for three months. The mom lived in a care facility and the first visit went wonderfully. But the second visit was shocking to Jytte.
“Her mom started screaming and cursing,” Jytte says. “I went to the nurses’ station to figure out what was wrong. The nurse told me she had Alzheimer’s.”
Jytte, who had experience in art and working with at-risk youth, knew nothing about dementia. But she started to learn. Using principles she’d employed with youth, she began offering additional activities at the facility.
“I didn’t view people with dementia as sick,” she says. “Everything I planned was directed at the well part of the person.”
She looked for activities that were collaborative rather than competitive, so everyone could bloom with a feeling of accomplishment.
Through the process of creating collectively, people relaxed and became comfortable with the materials. This experience was so fulfilling and moving that Jytte began working with families, guiding them in doing projects together.
Jytte suggests collages because they are easy and there is no right or wrong with collage.
“Collect old magazines, buy a few glue sticks, and break down big boxes to use for cardboard,” she suggests. “Engagement and conversation are the important things; if it never gets beyond discussing a picture of daisies that reminds her of her growing up garden, that’s fine.”
Jytte believes the keys to engagement include giving people enough time, letting them work at their own pace, and offering them consistent opportunities for self-expression.
When possible, invite others to join you for the collage experience. Introduce the project by asking the person with dementia for help, saying, “Hey Mom, I really want to do this project. Want to help me?”
If Mom is reluctant, start the project and mention; “I sure could use your help if you don’t have anything else to do.”
Tear pictures out of colorful magazines.
Let Mom direct the artistic action.
Use the pictures to trigger conversation.
Enjoy the process and don’t worry about a finished product.
Jytte Fogh Lokvig, PhD, is the author of The Alzheimer’s Creativity Project and Alzheimer’s A to Z, Secrets to Successful Caregiving. She is also a founder of the Alzheimer’s Café.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Even before my parents moved from Memphis to live near me in Kansas City, they were part of my social circle. We always invited friends to family holidays and I often hosted gatherings when my parents visited. I wanted them to know my friends and vice versa. When they finally moved because of Mom’s increasing memory issues, they had a small community of people who already knew and cared about them.
So I was very interested when I read Martha Stettinius’ thoughts on Aging in Community. Martha lives in a co-housing setting in New York and knows the benefits first-hand. I wanted to share some of her insights.
From Martha Stettinius, author of Inside the Dementia Epidemic: A Daughter’s Memoir
How does aging “in community” differ from aging “in place”? And how can we age “in community” no matter where we live?
Many boomers have witnessed their parents’ struggle with long-term care and they want an alternative to aging by themselves at home and overtaxing family members, or to being placed in a large facility. They seek a network of mutual support among friends, family, and their community, a network that allows them to help others now, and receive help in the future.
Aging in community can mean living in an intentional community such as in cohousing, or within a network of neighbors who volunteer to help each other, such as the Beacon Hill Village in Boston. Building this community means finding or creating the places and relationships that can sustain us as we grow older and sticking by friends who are living with frailty, dementia, or a disability.
I have lived in cohousing with my family for 16 years, and believe that if we age in community we are more likely to remain healthier longer, stay in our own homes longer, and appreciate the gifts of giving and receiving care. We are more likely to accept our vulnerability and understand that asking for assistance and companionship is not a weakness.
We can also age in community in a facility, if it respects and empowers both elders and professional caregivers and fosters close relationships between staff and residents.
Martha’s ideas resonate with me and remind me to be present for friends, family, and neighbors who might need extra assistance or support.
For more about Martha’s work, visit her website at www.insidedementia.com
“This will help you,” she said.
At first, I had my doubts about the healing power of inanimate objects. But I soon learned that cuddling a soft bear was a calming and healing experience.
My mother created her own soothing experience when she was deep into Alzheimer’s. Here’s an excerpt from this story, from my book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
A Doll of Her Own
That afternoon, while my mother is walking down the left-hand side of the corridor in the Alzheimer’s unit, tapping one hand on the handrail, and pressing the other palm on her forehead, she sees a baby doll lying on the floor. Mom’s adult diaper rustles as she bends down, picks the baby up, smoothes its curly hair and carries it with her to the dining room. There she settles in a chair and rocks the baby, talking and singing to it.
“Your mom’s fallen in love with a baby doll,” Leticia, the nurse aide, says when I visit.
Mom is sitting at the table in the small dining room, her head bent over, as if she’s fallen asleep on a long journey. I touch her shoulder once, twice and on the third time, she straightens, notices me and smiles.
I sit beside her and spread out some photographs. She is staring vacantly at a photo of her granddaughters when Leticia brings over the baby doll.
Mom lights up, holds out her arms and says, “You’re cute. You’re so pretty. You’re a good boy. You’re a good girl.”
I look on in amazement. I haven’t seen Mom so animated in weeks. Yet I feel a pang: I had yearned to be the one who jolted her into vivacity.
I listen as Mom continues her conversation with the baby. Maybe the ease of having someone who doesn’t talk back, who doesn’t hope you will complete a sentence, who doesn’t care if the words are missing or not right, maybe that freedom lets Mom flow with her speech.
I decide to buy my mother her own baby doll.
At the toy store, the dolls are all full of activities. One laughs when you press her belly. One has a musical bottle. Another takes your picture …
I search the aisles for a quiet doll without too many accomplishments. Finally I find a soft, rosy-cheeked baby, a good size to cradle, who boasts only an open mouth for a pacifier or bottle.
“Some little girl is going to really enjoy this doll,” the cashier says as I pay.
I smile as I envision that 87-year-old little girl who is my mother.
Mom sits in a chair in the TV room, eating strawberry ice cream out of a round cardboard container. I know better than to compete with dessert, so I wait until she has finished the last smidgen.
Then I put my hand on her shoulder. She looks at me, her eyes vacant.
“Hi, Mom,” I say. She stares at me and then she sees the baby doll.
“You’re here,” she says, her eyes widening. “My little girl is here.”
“Bo bo bupe, tootle ootle, oop. I have my little girl,” she croons.
She smiles at me; she smiles at the doll. Does she know I’m her real little girl or is she imagining the doll as her child? At this moment, as I watch my mother come to life and praise her baby, it simply doesn’t matter.
“I’m too busy to even begin to think about doing anything more – even reaching out.”
When I read Yosaif August’s blog, I really identified with this sentence. Yosaif is the author of Coaching for Caregivers: How to Reach Out Before You Burn Out.
Here are some of his words of wisdom:
“When we’re exhausted or on overwhelm, how do we begin thinking about doing anything beyond what we’re already doing? And reaching out certainly sounds like a major bit of doing.
“But, I’d like you to consider the idea that reaching out is not just another item on a ‘to do’ list. It’s on a different kind of list, a ‘to be’ list. This item on the list is about being connected. About being receptive to the web of connections that can make our tough times much more endurable and our better times much more enjoyable.
“Take a few moments and imagine yourself being open to receiving the love and support that is flowing towards you. Try this even if you don’t quite believe it right now. Relax into it. Imagine your antenna beaming out, letting people know you are in receptive mode. Relax into it.
“Opening up more to love and support is a great way of taking care of yourself.”
I was lucky; during my caregiving journey with my mom — when I was too exhausted and shy to reach out for help — a dear friend reached out to me.
When Maril asked, “Can I go with you to visit your mother?” I felt like a flutter of angels had gathered around me.
“Really?” I asked. “You want to see Mom with me?”
She did. I prepared her for our visit, describing Mom’s various moods. Maril did not seem shocked, worried, or afraid. I told her about walking into the sometimes chaotic energy of the locked Alzheimer’s unit. She simply nodded as if this were an ordinary occurrence, which, for me, it was.
The day of our visit I felt lightness inside; I was eager to share my secret world with my friend.
When we arrived, Mom was sitting at a table in the dining room with a magazine in front of her. She looked pretty and serene and she smiled when we came in. We sat next to her and Maril took her hands.
“How are you Fran?” Maril said, looking into my mother’s eyes.
“Well I you know the scatter of it all,” my mother answered.
“I do know the scatter of it all. How are you getting along here?”
As I listened as my mother and my friend talk, I was proud of my mother’s poetic and eccentric answers, proud of the way she engaged in the conversation. And I was grateful that my friend was able to listen to her words and intuit their deeper meaning.
“I enjoyed seeing your mom,” Maril said, as we drove home. “I’d like to go again with you sometime.”
The visit was a huge gift for me. Seeing Maril engage with and appreciate my mom reminded me of my mother’s many talents and facets. This knowledge later helped me get through those moments when my mother seemed faraway or lost. My friend reminded me — there are so many ways to carry on a good conversation. All you need is attention, intention, and love.
“Where words fail, music speaks”
Hans Christian Andersen
We invite you to experience an uplifting cinematic exploration of music and the mind. Alive Inside’s inspirational and emotional story left audiences humming, clapping and cheering at the 2014 Sundance Film Festival, where it won the Audience Award.
If you are not in Kansas City, Click here to look for this film in your city.
If you’re in Kansas City, please join us on Friday evening, August 15th at 7:00 at the Tivoli Theater for the premiere of Alive Inside: A Story of Music and Memory.
Alive Inside follows social worker Dan Cohen as he fights a broken healthcare system to return a deep sense of life to those living with memory loss.
Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized through the simple experience of listening to favorite music. He reveals the uniquely human connection we find in music and how its healing power can triumph where prescription medication falls short.
The film features illuminating interviews with experts including renowned neurologist and best-selling author Oliver Sacks (Musicophilia: Tales of Music and the Brain) and musician Bobby McFerrin (“Don’t Worry, Be Happy”).
Invite Music & Memory into Your Life
“Music is an outburst of the soul.”
This involves creating a personal playlist. Ideally, each song evokes an interesting and positive memory.
Here’s a song from my playlist:
I am pushing my cart through the neighborhood grocery store when the background music permeates my thoughts. The strains of Summer Place transport me to my growing up home in Memphis, Tenn. I see myself, age 12, sitting at my beat-up old upright piano, clunkily accompanying myself as I sing. My mother is perched on the piano bench, singing along. “There’s a summer place,” we croon. We do not have great voices but we sound good together. “Where I’ll be safe and warm.” The song offers a moment of respite during a period when Mom and I are not getting along well. Singing together makes us smile and laugh. And now, in the grocery store, in front of the heirloom tomatoes, I smile as the song envelopes me once again, connecting me with my mother, my childhood home, and that piano I earned by doing chores (including picking bag worms off our neighbor’s bushes for a penny a worm.)
“Music is the language of the spirit. It opens the secret of life bringing peace, abolishing strife.” — Khalil Gibran
“You need to do something fun,” a friend said.
“I’m too tired to think of something fun,” I said.
My parents were going through a particularly hard time; my mother’s behavior had gone beyond the scope of assisted living and they had advised that she go into a psych ward to have her medications re-evaluated. My father was worn to a frazzle and we were both unnerved by Mom’s zombie-like appearance as the doctors tried to figure out the correct combination of medicines. Fun seemed like a word from another planet.
Yet I realized my friend was right: I needed to do something that would cheer me onward.
Creating Fun-Sized Options
So early one morning, before I was tired or confused or sad, I made a list of little items or activities that gave me a sense of well being.
At first, the list was small—I was too brain-worn to think of much:
Read for pleasure.
Do a crossword puzzle.
Talk with people I cared about.
During the next week I added:
Listen to Dancing Queen.
Hold a stuffed bear.
Go to yoga.
Dance to Dancing Queen.
Making Time for Fun While Still Being a Very Responsible Person
That weekend, I vowed I would do three things on my list. I ate chocolate (OK, that was an easy one, but I had to start somewhere!), talked with a friend, and read two chapters of a mystery.
I felt lifted up, as renewed as if I’d had four hours in the spa. And I still was there for my parents, my work, and other life responsibilities. So I continued the process of adding to my list and incorporating one fun thing into every day. Sometimes it was only part of a crossword puzzle or creating a three-minute collage while I was on hold with my mother’s doctor. But even those few minutes gave me back a part of myself and allowed me to more fully appreciate my interesting and chaotic life.
Q for U:
How about you — what are the small fun things on your list? And are you giving yourself time to do them?
“My mother has Alzheimer’s. What can I do so I don’t get the disease?”
Frequently worried caregivers ask Marwan Sabbagh, MD, author of The Alzheimer’s Prevention Cookbook: Recipes to Boost Brain Health, that question. Dr. Sabbagh is a geriatric neurologist, dementia specialist and the Research Medical Director of the Banner Sun Health Research Institute in Arizona. He understands the concerns and fears of caregivers and he is able to offer them hope.
“The changes in the brain that lead to Alzheimer’s or dementia start 25 years before the first day of forgetfulness,” Dr. Sabbagh says. “The dementia is at the end of the disease, not at the beginning.”
The more he researched the impact of spices and food on the brain, the more he realized the importance of diet in boosting brain health.
Foods are More Effective than Supplements in Protecting the Brain
* The nutritional values of food are well researched; the nutritional value of supplements varies widely from company to company.
* The body can break down food into small, transportable molecules that can permeate the brain’s protective barrier and reach the brain with the nutrients still intact; supplements aren’t as easily broken down and often cannot penetrate the blood-brain barrier.
“The road from our mouth to our brain is long and winding. Because of the way we digest food and nutrients, the best source of neurotransmitter precursors is almost always food; supplements are much less reliable,” Dr. Sabbagh writes.
Caregivers Need Nourishing Foods
“Caregivers take the disease on the chin,” Dr. Sabbagh says. “Their stress levels are higher than the people with Alzheimer’s.”
This stress weakens the immune system and puts them at risk for illness and disease.
Five Ways to Boost Your Brain Now
* Spice Up Your Life and Increase your Antioxidants
The spices that add the biggest boost of healing antioxidants include
cloves, oregano, rosemary, thyme, cinnamon and turmeric. Add turmeric to your eggs. Sprinkle cinnamon into your coffee or smoothie. Include rosemary in your salad.
* B is for Brain Health
“The three most important vitamins for brain health are B6, B9 and B12,” Dr. Sabbagh writes.
For B6, eat sunflower and sesame seeds, pistachios, bananas, spinach, and vegetable juices.
For B9, nibble on broccoli, kale, lentils, peas, and strawberries.
For B12, eat eggs, shellfish or fatty fish. For vegetarians, take a supplement.
* Dine Mediterranean Style
Reduce red meat, decrease saturated fats; add more fish and fruits and vegetables. The more fruits and vegetables, the healthier the brain.
* Believe it Can Happen
“You have to make a commitment to incorporate healthy eating into your life,” Dr. Sabbagh advises. “Part of this is psychological. If you believe this is hard, that belief will make it hard. It you believe that a whole foods diet is part of who you are and how you live, you can easily weave healthy eating into your life.”
* Don’t’ Wait: start today.
Q for U:
How do you add nourishing foods and spices into your daily diet?
For more information about boosting brain health, visit Dr. Sabbagh’s website:
Read his book The Alzheimer’s Prevention Cookbook: Recipes to Boost Brain Health, written with world-famous chef Beau MacMillan.