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Engaging during the Dementia Journey: One Story and Six Tips

Deborah Shouse - March 13, 2017 12:17 PM

My satchel was packed with potential connectors, not the electrical type, but the emotional, engaging type.  I had a sheaf of favorite poems, an Audubon bird book, a list of songs Mom and I liked, some bright red Mardi Gras beads, several colorful scarves, and some paper and markers. I was eager to see what Mom might fancy and I felt prepared for any creative impulse. But as usual, my mom surprised me.  When I walked into her room in the memory care community, she was sitting on the bed, fiddling around with a blanket. She smiled and held out her hands. I sat beside her, held her hands, and smiled at her.  She laughed. I laughed. She made a little funny face. I mirrored her. I followed her lead until she suddenly gripped my fingers and closed her eyes. I closed mine, but kept sneaking peeks at her.  She was asleep, a lazy smile on her face, so I closed my eyes and rested with her.

Spontaneity and surrender were two of the many lessons my mom taught me during her dementia journey. I loved preparing for our time together, cobbling together ideas to engage us both. Sometimes we sat quietly, leafing through magazines. Other times, I sang Mom show tunes. Still other times, I simply went with the flow and enjoyed Mom’s energy and spontaneity.

My mom has since passed away but her spiritual and emotional gifts linger on. When I visit friends who are living with dementia, here are a few ideas for connecting.

•  Choose a quiet space relatively free of distractions.
•  Select a time of day when you both have lively energy.
•  Bring a project (or projects) you’d both enjoy.
•  If the person is shy about creative projects, issue a low-key invitation, such as,
“Want to help me with this project?”
•  Allow the activity to unfold at its own pace, offering support as necessary and
encouragement along the way. Enjoy the process.
•  If the activity doesn’t go as planned, don’t worry. Go with the flow and relish your time together.

Deborah Shouse is a writer, speaker, editor, former family caregiver, and dementia advocate. Deborah’s latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so you can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for dementia programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia-based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more, about Deborah and her work, visit DementiaJourney.org.

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