Eight Steps to Help People with Dementia Feel at Ease during Holiday Gatherings

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.

Magic in the Land of Caregiving

As Thanksgiving approaches, I am so conscious of my many, many blessings.

Recently, I heard this quote on a Deepak Chopra meditation: “There’s a blessing in every minute.”

My friend, the author Bernadette Stankard, writes beautifully about noticing those wonderful and sometime subtle blessings.

Here’s to a joyous holiday.

Warmly,

Deborah

Magic in the Land of Caregiving?   by Bernadette Stankard

Sometimes caregiving is too much with you. When you see your spouse struggling with the illness, when you see yet another thing that speaks of a lost relationship, when you hear another story of someone trying to make sense of the loss of memory in their loved one, you just want to scream, “No more!”

And then I remember a quote from Roald Dahl, the children’s book author. It reminds me that you can never lose sight of the magic of hope: “And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.”

Perhaps great secrets to living are hidden in the unlikely place of caregiving and in the people who cross our paths. Here’s to another day of searching for those secrets and being open to the magic.

*****

Author-CRP-Site-Stankard                                                                                                     Bernadette Stankard

is the author of several books, including Dancing In The Dark – How To Take Care of Yourself When Someone You Love Is Depressed.  She gives presentations on creativity, multiple intelligences, and living with depression.

The HERO Project: Four Steps to Creating Scraps of Stories That Connect

One summer, my parents and my 10-year-old nephew Jake were visiting me and I wanted an activity we could all do together. Normally, Jake and Mom had a grand time together; but my mother, in her early stages of Alzheimer’s, wasn’t the grandmother Jake was used to. Jake knew his grandmother had something wrong with her but he didn’t know what to do about it. So I created a family project, a simple story scrapbook, complete with photos and a storyline, starring Jake and Nana and my father.

Since Jake was interested in strength and power, I created a tale where the strongest kid learns about something even more powerful than physical prowess – love.  Jake the strong

Designing a Project We Could All Participate In

This was a healing project for my family.

Jake and I worked on the storyline, then shared it with my parents. I took photos as they acted out the script.  My mother was going through a stage of being very resistant and she had a good time acting out her frustration. My depressed father actually smiled and laughed during the photo shoot.

When I had developed the photos, we sat around the table and put the scrapbook together. Mom and Dad enjoyed leafing through magazines for extra sayings and words to spice up the pages. Most of all they enjoyed sitting around, focused on something other than the confusion of Mom’s Alzheimer’s.

We all loved the finished product. Our story scrapbook had a meaningful message and we shared the project with our friends and relatives. It was a way to let people know, “We’re still here and we’re still having fun, despite Mom’s diagnosis of dementia.” Reading this story inspired people to reach out to my parents and stay connected.

Chasing Away the Holiday Blues and Adding Creative Jazz to Our T-Day

We did other story scraps –some with our family as a group, others starring individuals. Each time we loved the process and the results. We called this work, The HERO Project, because we were inviting people to have fun and be seen as the heroes they really were.

turkey7One Thanksgiving, when I was grieving because Mom could no longer help with the holiday meal, I created a HERO Project called, “The Little Kitchen that Could.” The story starred all of us and gave us a creative focus during that difficult holiday period.  My parents smiled as we sat around the dining room table, preparing for our photo shoot by taping paper faces on my pots and pans and giving the unpeeled potatoes big grins. They smiled again as they stood in the kitchen and acted out “refusing to help with the dishes.” Later, they enjoyed sitting with us as we put together our story scrapbook.  turkey6

Four Stunning Steps to the HERO Project

These projects are easy and fun and can involve as many people as possible.

  • Write a simple story that has humor and meaning.
  • Stage a photo shoot, taking pictures that illustrate your story. Fill in with old photos or magazine pictures.
  • Create a collaging session, where everyone gathers to put together the script and pictures in a low-key scrapbook.
  • Celebrate by sharing your book with everyone!

For more examples of HERO Projects, visit The HERO Project link at www.TheCreativityConnection.com/

Giving Yourself the Silent Treatment: Five Easy Steps to Soothe Inner Chaos

Are there things you know that will make your life better and easier, and yet you can’t figure out how to incorporate them into your routine?

One of my key omissions is meditation and silence. That’s why I was very excited when I interviewed Sarah McLean, author of Soul Centered: Transform Your Life with 8 Weeks of Meditation. McLean’s father had dementia and she understands how difficult it can be to offer yourself those few moments of silence.

Five Ways to Ground Yourself Through Silence

For McLean, the silence has been an important part of her spiritual and personal growth.

“By practicing silence, we explore our intuition and our connection to the divine,” McLean says. “When I sit quietly, I become more aware of my own thoughts and I notice the habits that keep me from seeing the beauty in life,”

McLean offers these simple tips for inviting mindful silence into your life.

Wake up with awareness.

Give yourself a slice of silence for the first five minutes of your morning. Avoid instant connections to people, TV, radio or Internet.

Hear the stillness.

When possible, walk outdoors. Listen to the sounds and feel the stillness.

Enjoy a Silent Snack

For one meal or snack a day, turn off all noise and eat in silence. Be present with the taste of your food.

Practice Silence by Listening

Being a listener is a great way to start practicing silence. Wait until you are moved to speak; don’t compulsively fill up the quiet.

Practice Silence with Your Loved One Who Has Dementia

McLean wrote this after a visit with her father:

“There seemed to be nothing I could say to relate to him and to jar his memory. One day, I sat with him and meditated. Somewhere during my meditation, I had the thought to open my eyes to be sure he was all right. I was surprised to see him sitting up, alert, bright eyed, and smiling. He looked blissful and joyous. I closed my eyes and continued to meditate. When I left that day, I felt as if I had connected with him, and he with me for the first time in years. As a meditation teacher, I was amazed that it had taken me this long to think to do this. I visited him a few more times in December and early January and meditated, and felt fulfilled again and again. “

By adding in those moments of silence, you’re inviting more joy, fulfillment, inspiration, and connection.

*****

McleanAlong with her 25 year meditation practice, Sarah McLean has explored world spiritual and cultural traditions: she’s been a 2-year resident in a Zen Buddhist monastery, lived in an ashram in India, taught English to Tibetan Buddhist nuns, bicycled along the silk route through Pakistan, meditated in temples in Thailand and Japan, and trekked the Golden Triangle in Asia. She worked with Deepak Chopra for eight years as the Program Director of the Chopra Center for Well Being. Sarah McLean is passionate about teaching and sharing what she’s discovered about the modalities of mind/body health, self-awareness and her spiritual journey.  Endorsed by Deepak Chopra and featured in The New York Times, Sarah is the founding director of the McLean Meditation Institute in Sedona, Arizona, which offers meditation classes, retreats and teacher certification courses. www.McLeanMeditation.com.

Helping Children Stay Connected with Their Loved Ones Who Have Dementia

How do children internalize the dementia of a beloved family member and what can we do to help them connect and understand the process?

Max Wallack, a gifted young writer, offers wonderful insights in his new book, “Why Did Grandma Put Her Underwear in the Refrigerator?” Max is a philanthropist, Alzheimer’s advocate, and college student in neuroscience and psychiatry. His great-grandmother had Alzheimer’s and Max helped care for her when he was growing up.Wallack book

I was so impressed by the book that I asked Max to share more of his insights.

Here is a Q & A featuring some pieces of “Wallack wisdom.”

Q. Why is it important to talk to children about Alzheimer’s when a relative or close friend is going through the disease?

A. You want to allay the child’s fears so they can continue to have a loving relationship with their relative or friend.

Q. What was most confusing to you as a child?

A. I had a hard time understanding why Great Grams might be confused and behave very badly at home and then appear normal when we went out.  A doctor told me that sometimes the nerve impulse in the brain jumps the synapse and sometimes it doesn’t.  I tried to visualize this in the book with my illustration of the ball player who sometimes makes the catch and sometimes doesn’t.  The diseased brain cell cannot always “make the catch.”

Q. As a child, what were the gifts you brought to your family and to your great-grandmother?

A. Her whole life, my great grandmother loved being with children.  Being with me gave her great pleasure, even up to the last few days of her life.

Q. In general, how can children add to the caregiving process?

A. Just being there can make a difference.  Sometimes adult caregivers need a few minutes for themselves.  Perhaps they need to cook a meal or take a shower.  Even a young child could alert a caregiver if the person who has Alzheimer’s wanders outside or gets into some obvious trouble.

Q. How does being part of a caregiving family benefit children?

A. I developed a very early sense of responsibility and empathy. I know of other young caregivers who have a sense of caring and responsibility beyond their years.  Their parents don’t thrust this responsibility upon them; rather, it is developed as they learn empathy. Children have a natural tendency to want to help.  Parents should allow them to participate in the caregiving and not shield them from what is happening.

Q. What kinds of support do children need?

A. Very young children are often confused about the disease and worry it might be contagious.  They need a simple explanation of what is happening.  I believe Alzheimer’s disease should be taught in our schools.  This could lead to mini support groups for children, perhaps facilitated by a guidance counselor.  I hope schools might use “Why Did Grandma Put Her Underwear in the Refrigerator.”

Q. Anything else you’d like to include?

A. People with Alzheimer’s disease are still the same people you have always known. They are “more there” than meets the eye.  The trick is to find a means of communicating with them.  The creative arts represent a great means of connection, since the area of the brain involved in creativity is one of the last areas affected by the disease.

 ***

Max2012BMax Wallack’s journey with his grandmother helped him identify his calling. He is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine. He is also the founder of  PUZZLES TO REMEMBER. a project that provides puzzles to nursing homes and veterans’ institutions that care for Alzheimer’s and dementia patients.

You Don’t Need a Partner to Dance: The Power of Personal Writing

Recently I heard author Jill Lepore speak at the KC Public Library. During the Q and A session, someone asked, “Jill, you’re a staff writer for the New Yorker. How did that happen?”

“Well,” said Jill, “you know those cheesy old paintings where the hand of God reaches down through a cloud? It happened like that.”We all have those “hand of God” moments. For me, one such moment was when my friend, author Bernadette Stankard, suggested I send my book to her publisher, Central Recovery Press. I did and they were instantly interested. Just last week, I received the beautiful new edition of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. Soon available, as they say, in “bookstores everywhere.”  

So many hands, human hands, have helped me edit and shape this book and I am grateful to each person who contributed ideas and insights. I am also grateful that I gave myself permission to write these stories.

For me, writing is about learning to dance on the page.

While I write, I picture a woman living in a trailer in North Dakota.  In the evening, she sits in a brown living room, her husband in a lounger watching television, her son sprawled on the floor doing homework.  She picks up my book and is transported, connected to the deeper parts of herself.  When her husband asks, “Why are you crying?” she hands him the open book. The noise of the television blurs as he reads.

“You’re not really a writer until you’ve been published,” a journalism professor once told me.

The more I write, the less I believe him

The tender manuscript goes out, primped and dressed up, clean and on good behavior, ready to meet the right editor. The process of getting published is akin to looking for love: a blend of alchemy, philosophy and fate. For every one of my stories that unfurl themselves in the pages of a magazine, I have a stack of shy sisters, waiting to be invited onto the dance floor so they can reveal their billowy brilliance.

 

I invite myself out onto the dance floor. 

Last week, I received four pieces of mail that weren’t from major utility companies. I knew from the solemn brown of the envelopes that three were rejections. One was a card. Like a good child swallowing medicine before eating cake, I opened each rejection. Two were forms. The third said, “Gee, good story. My ex-girlfriend is also from Kansas.”

The card was from the daughter of my dear friend, who had recently died. As a way of sorting through my own grief, I’d written her daughters a letter, describing how much I admired their mother.

“Dear Deborah,” her daughter wrote me now, “Your letter meant so much to our family. I made copies for my sisters and we are carrying them around in our purses. I read the letter to my cousin in Texas.  We both cried…”

As I read this card, my stack of rejections grew insignificant. I remembered why I want to write: simply, to connect with people.

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

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?

Four Ways to Acknowledge Loss: Seeing What’s Left in the Empty House

The scary house is gone. My grandson Robert, age two-and-a-half, stares forlornly at the ordinary-looking yard, unable to quite take in the transformation.

For the three weeks leading up to Halloween, this lawn was one of Robert’s favorite haunting places. Our neighbor created a spooky graveyard, complete with a turning black-robed ghoul that twisted its sinister head to glare right at you, a skeleton that popped up from behind a tombstone, a gargoyle with evil red eyes that crouched menacingly on the porch roof, a wicked looking fence, a tower with a secret compartment that housed a pulsing corpse, and a blue-eyed ghost that floated mysteriously in the background. The first night Robert saw this spectacle, he held tight to his grandfather’s hand and stared. He didn’t want to get too close and he didn’t want to leave; he watched from a safe distance and noticed everything.

Even in the daylight, Robert didn’t want to get too close. But he was captivated by all the scary activity and he loved sitting across the street from the house, waiting for a car to drive past so the “up and down” man behind the tombstone would thrust upwards and surprise us. Every day that I picked him up from school, he asked to go to the scary house. This normally racing, spinning, bouncing boy would then sit still and we  discussed the gargoyle, the ghoul, the crow, the pumpkin, and more.

But today, the day after Halloween, the yard is mere grass. Robert holds my hand and we talk about all the creatures that were there, just yesterday. He notices the indentation the tower made in the grass and stands in that spot. He is sentinel-still and solemn, trying to understand this great and sudden loss. Then he points, excited. “The ghost.” he says. The ghost is still hovering on the screened-in back porch. The ghost is Robert’s favorite and we are both very glad to see him. When we finally have to go, he waves goodbye to the ghost, content that at least something is left.

As we walk home, I think about some of my own “scary houses,” things that both intrigued and frightened me. My mother’s Alzheimer’s was a terrifying mansion.

I remember visiting the Alzheimer’s Association and having the social worker show my father and me a picture of the brain with advanced dementia. After I returned home, I wrote about my feelings, saying, “ I look around my living room and imagine a man walking in and silently removing the sofas. No comfortable way to sit down. Another man comes in and takes the coffee table. No place to set down a teacup. One person removes the pictures and lamps, another hauls out the books. I imagine the room stripped down to its original emptiness.

“My mother is going to lose everything,” I say aloud, hearing my voice echo in the imaginary emptiness  …

Then I remember walking into my house before I bought it, and falling in love with the emptiness, the scarred wooden floors, the wide-open space, and the plain cream-colored walls. Even without any of the comfort and familiarity of furniture, the rooms had their own beauty.

I close my eyes and imagine that beauty. I pray I will have the courage to discover who my mother is, day by day, and to love her as her new emptiness unfolds.”

Robert knows just how to take in his loss: stand still, take your time, remember everything you’ve lost and then appreciate what is still there.

As for my mother, even though she’s passed away, she never “gave up the ghost.” She’s still here with me.

An Insider’s Look at True Love: Charlie and Elizabeth’s Story

Every week, I interview couples and write their love story for the Kansas City Star. Every story is different and talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. A few days ago, I talked with two friends whose love and cosmic connection shone out from their faces and rang out with their words. I wanted to share this small part of their story with you.

**
The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”

“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.

“Maybe you should find out,” his friend replied.

So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.

Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.

Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”

“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.

Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.

But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.

alzCharlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.

They began traveling and made plans to move in together.  In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other

“None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”  Charlie&Elizabethz

*****

Q 4 U: What is a reason for gratitude in your life?