Tag Archives: Alzheimer’s Dementia

Three Top Tips for Tuning into Singing: Insights from Finland

images-1Mom was staring into space, oblivious to my brilliant smiles and cheerful conversation. So I started to sing, just to occupy myself. I chose songs Mom liked, such as “Oh What a Beautiful Morning,” “A Summer Place,” and “You are My Sunshine.” Normally, I felt a little down when I didn’t really get to connect with Mom during my visits. But after a half-hour of being a one-woman show, I felt uplifted and energized. And Mom seemed to be making a sound much like humming.

Singing was often a part of my time with Mom. I’ve always felt happy after “making a joyful noise.” Now a study from Dr. Teppo Sarkamo and his colleagues in Helsinki, Finland, explains why.

Dr. Sarkamo’s research found that “regular musical activities can have an important role in maintaining cognitive ability, enhancing mood and quality of life” for people living with mild to moderate dementia. These activities also promote the well being of care partners and offer a beneficial leisure activity for the person living with dementia and the care partner.

imgresInvite Out Your Inner “American Idol”

You don’t need special musical abilities to benefit from listening to music or singing. The research shows that incorporating simple musical activities in daily care is “a cost-efficient way for offering emotionally, cognitively stimulating, and enriching musical experiences.”

The study’s music therapist, Sari Laitinen, kindly offered these ideas for care partners and the person living with dementia.

  1. First, reserve enough time together to spend with the music. The main thing is feeling peaceful together. When singing, choose the songs together from a songbook. In our research project, we prepared a song booklet of our own for the participants, which mostly included well-known Finnish singe-a-long songs from their early years: childhood, teenage years and early adulthood. The care partner can begin by humming a melody first, and if their partner recognizes the song, they can start singing it together. Usually, the partner knows the lyrics “by heart” and their memory retrieval is quite automatic.
  1. Usually the songs bring about personal, autobiographical memories related to the life era and events when the songs were popular. Allow the reminiscence of your partner to proceed on its own time and terms, accepting the stories and not immediately correcting if the people or places happen to be incorrect. You want a mutual feeling of telling each other important things about life. It is all about acceptance and the understanding that something important is shared. The feeling of being understood helps to cope with life.
  1. Listening to music is based on the same principles as singing together: the care partner can suggest some records he/she thinks are meaningful and see what happens. When asking your partner to choose the record, it is good to have some LPs or CDs with a photo of the artist on the cover. Again, it is nice to have a quiet place for the listening and time to share the stories and the feelings that the music evokes. It is good to keep in mind that although the songs are familiar from a long time ago, the experience of music is always “here and now”. By experiencing the music together and by being sensitive to the ”reactions” (emotions, thoughts, memories) evoked by the music, the care partner can offer acceptance and validation of the experiences, the feeling of being understood. Given time, this can lead the discussion from the reminiscence of old times to themes that are important now, such as acceptance of the lived life, mourning of losses, joy in the moment, feeling of vitality, strengthening the feeling of life and so on.

For more information, visit: Singing is beneficial for memory and mood especially in early dementia

Clinical and Demographic Factors Associated with the Cognitive and Emotional Efficacy of Regular Musical Activities in Dementia, Teppo Sarkamo, Sari Laitinenb, Ava Numminenc, Merja Kurkib, Julene K. Johnson, 
and Pekka Rantanene
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Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. 

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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A Love Story about Being Braver, Stronger, and Smarter

 “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.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. 

 

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Bringing Home the Gravy

rockwell thanksgivingThanksgiving changed the year I went vegetarian. I did not mind giving up the tender, moist turkey or the savory oyster-specked stuffing. But giving up the flavorful flow of mushroom-laden gravy was quite another thing. I watched enviously as my family ladled the luscious liquids over their mashed potatoes, turkey and stuffing. As I nibbled dryly on my carrots, green beans and salad, my lower lip protruded. I felt left out and deprived.

My brother, Dan, ever alert to the pouting big sister, came up with a solution.

“Next year I will make special vegetarian gravy just for you,” Dan promised.

Years later, that special vegetarian gravy has become one of my favorite Thanksgiving rituals. I begin fantasizing about it the moment the autumn leaves turn crimson. I know that in mere weeks, my brother and his family will arrive and I will have my yearly boost of family and feasting, highlighted by gravy.

When my brother calls to tell me his travel plans, I write his arrival time and GRAVY on my calendar. The night he comes to town, we make the shopping list together, avidly discussing how many pounds of mushrooms we need for both the carnivore and vegetarian pots of gravy. I relish the early-Wednesday morning trip through the grocery store, where Dan and I and our children carefully select the foods we will be making the next day. We linger in the produce aisle, filling several sacks with gleaming white mushrooms and buying rustling yellow onions. mushrooms

On Thanksgiving Day, Dan and I and other family members spend long, luxurious hours cooking. Dan mans the stove and I manage the slicing and chopping. Together we snap, peal, slice and dice the vegetables that will accessorize the turkey. I take special pleasure in wiping clean and slicing the mushrooms, then bringing my brother the brimming bowlful. When he has nodded his approval, I get out the old copper pot I bought in Germany in the early seventies. This year, Dan is improving his already amazing gravy. With his new immersion blender, he creates a rich base of caramelized onions, whose flavor surpasses that of the lowly vegetable cube. He adds in a little flour, then gentles the mushrooms into the onion broth. When the pot is bubbling with thickening nectar, he says, “Taste this and see what you think.”

I always think the same thing—“Wow, this is great.”

We are in a state of giddy and satisfied exhaustion by the time our guests arrive. We share grateful prayers with everyone and lay out the feast, including plenty of turkey-based gravy for the rest of the family.gravy

Then comes the moment I have been waiting for: I sit down, my own personal pot of gravy poised by my plate. I cover the mashed potatoes, carrots, green beans, and salad with the aromatic concoction and I savor every bite. But more importantly, I savor the bounty, creativity, and love that have gone into this simple dish. Through this gravy, my brother speaks with his hands and his heart, saying: “I care about you and I am going to make sure you are not left out and that you have something fantastic to eat.”

For that and so much more, I am thankful.heart gratitude

…………

And now, if you’d like to bring home this delicious gravy, here’s how:

Dan Barnett’s Chicago Style  Never-Enough-Mushroom Vegetarian Gravy

Ingredients

2 large onions (chopped)

2 pounds (or more) white button mushrooms sliced (can add some portabellas for enhanced flavor)

1 cup of white wine (of lesser quality)

Salt & pepper to taste

Olive oil

Directions

To create the gravy base:

In a four -quart pot, pour a thin layer of olive oil and turn the burner on medium.

Add the onions and sauté for10-15 minutes until they are caramelized (golden brown)

Add water until the pot is about half full.

Simmer slowly for 30 minutes.

Blend the onion water mixture using either an immersion blender or by transferring the mixture to a food processor.

Once you have the gravy base

Add the 2 pounds (or more) of sliced mushrooms, white wine and fill the pot with water until it is 3/4 full.

Simmer for 30 minutes and season to taste with salt and pepper.  images

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Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Creating Personal Stories from the Care Partner’s Journey 

 

pen and paperMy mother’s Alzheimer’s drove me to write. My writing inspired me to speak.

Over the last years, I have received enormous pleasure from connecting with people all over the world, sharing the stories from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

My initial reaction was:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestions I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutesimages

 

Pouring my Emotions Out and Inviting Understanding In

I poured out my fears, anger and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

 

Putting Your Life on the Page

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  images-1

Give yourself time to feel your emotions, whether it’s through writing, art, music or other. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

 

I was lucky enough to read some of my stories to my mother and father and receive their blessing for my work. Anytime I featured people in a story, I shared it with them to make sure they were comfortable with the material. When they’re comfortable, it’s time to share with friends and a wider audience, if you wish.

 

Here are some writings from other people on this journey. 

51yPgnDrtkL._SX337_BO1,204,203,200_ Vicki Tapia’s memoir, Somebody Stole My Iron, details the daily challenges, turbulent emotions, and the many painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe the book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s/dementia patient’s family.” She wrote this story to offer hope to others whose lives have been intimately affected by this disease, to reassure them that they’re not alone.

51fxqMmobmL._AA160_Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself. Acting on long-term memory and skill, coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. On Pluto is a book about living with Alzheimer’s, not dying with it.”     On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Jean Lee’s memoir details her journey caring for both parents who were diagnosed on the same day. It is a WWII love story held together by faith and family.    Alzheimer’s Daughter by Jean Lee  512gVMAe5QL._SX328_BO1,204,203,200_

51qzWrMf+gL._SX331_BO1,204,203,200_Marianne Scuicco describes herself as a writer who happens to be a nurse. She writes this work of fiction based upon her care for the elderly. It’s a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara develops Alzheimer’s and Jack becomes her caregiver.     Blue Hydrangeas by Marianne Sciucco

Shannon Wiersbitzky writes this work of fiction through the eyes of a young girl, not surprising perhaps, as her author bio notes that her own grandfather had Alzheimer’s. In the story, when thirteen-year-old Delia Burns realizes that her elderly neighbor is beginning to forget, she involves the entire town in saving his memories.    What Flowers Remember by Shannon Wiersbitzky41O6F08LmLL._SX321_BO1,204,203,200_

 

 

 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Six Tips for Surviving the Holiday Season When a Loved One Has Dementia

t-dayNormally, 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. brownies

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.

gratitude

 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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