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.

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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.

*****

                                                                                                     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.  

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.

One 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.  

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 http://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.

*****

Along 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.

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.

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Max 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.