When care partners gather and trade stories and ideas, there’s usually magic afoot. We felt that magic when we met with a group of family and professional care partners to celebrate great connectors throughout the dementia journey. We presented engaging ideas using music, nature, laughter and more.
Lisa Vetter, Director of Healthcare Sales & Marketing, Santa Marta Senior Living Community, invited us to speak at an event announcing the community’s new care partner support group. The group is led by Jennifer Walker, RN, BSN, Clinical Community Liaison, Kansas City Hospice & Palliative Care. Jennifer also facilitates the KC Memory Cafe and she is compassionate, informed, and smart. Most importantly, she has a fantastic sense of humor.
Ron and I shared ways to stay connected through singing and music, looking at works of art together, bringing nature indoors, and laughing. And our audience shared their experiences as well.
Here’s a story about nature that inspired us.
Marcie took her mom, who was living with dementia, on a fascinating monthly outing: they drove out into the country to look at the full moon. Her mother didn’t talk much anymore, but she loved seeing the night sky and gazing at the magnificent moon. One evening, as the moonlight spread over the car, Mom began singing, When the moon comes over the mountain. Marcie had never heard the song before and her eyes filled with tears at hearing her mom sing so strongly and clearly.
Here’s a story about the power of familiar music. Karen’s mom was a devout Catholic, living with dementia. Though there were many things she didn’t remember, including her daughter’s name, when she attended Sunday mass, she melodically sang every word of every hymn.
We loved sharing with this group of dedicated and compassionate care partners, who were all seeking ways to stay connected.
Here’s an extra tip from Connecting in the Land of Dementia: When you want to boost energy and lift spirits, add a splash of laughter into your life. Look at a clock and say, “We’re going to laugh for 30 seconds,” and start ha ha ha-ing. Or pretend you’re talking on the phone and hearing a hilarious joke. Or warble out the Ha Ha Chorus by singing the Happy Birthday song in “ha ha ha” syllables.
“My husband and I have been married for 53 years,” a woman with delicately curled silver hair and mournful eyes told the group. “But in the two years since he was diagnosed with dementia, our relationship has changed.” She dabs at her eyes with a tissue and takes a breath. “It has grown even stronger. We are closer than we’ve ever been.”
Ron and I were in a conference room of caregivers in Ft. Wayne, Indiana, presenting for the Greater Indiana Chapter of the Alzheimer’s Association. We had just shared my story, Love in the Land of Dementia, and we were all talking about the gifts we have found in the dementia journey.
Another woman, whose husband was newly diagnosed, talked about her frustration and impatience before the diagnoses.
“Now that I understand what is going on, I have vowed to be more patient. I don’t want to waste a minute of our time together.”
“My husband doesn’t know who I am right now,” another woman said. “But the other day, he gave me such a compliment. He told me, ‘I want to marry you.’”
She told us how she rummaged in her cedar chest and showed her husband their marriage certificate. He read it with interest. Then he looked at her, eyes shining, and repeated, “I want to marry you.” Those words, so filled with love, lifted her spirits immeasurably. “To think that even now, when he doesn’t remember much of our lives together, he still loves me so much, that means a lot to me.”
She smiled, as we all applauded this amazing love.
We heard more stories of amazing love at our earlier presentation in Merrillville, Indiana. When we talked about the gifts and blessings we had each discovered in the dementia journey, one woman told us, “I find it an honor to take care of my mother. She has done so much for me and I am lucky to get to care for her right now. I am glad to be able to show my unconditional love for her.”
People shared many blessings—patience, the increased ability to live in the present, gratitude, flexibility, humor—but a deepening of love was the overarching message. We felt it during our own caregiving journeys, and we felt it deeply in the presence of those caregivers.
“The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart.” Helen Keller
To learn more about the work the Greater Indiana Chapter of the Alzheimer’s Association is doing, please visit : https://www.alz.org/indiana/
“How do we stay connected during the dementia journey?” This is a question with dozens of creative answers. Recently, we spent time at Northland Shepherd Center, hosted by Dianna Englander. We were sharing ideas for staying connected with the Together We Care Caregiver Support Group, a lovely gathering of family caregivers and friends.
Caregiving is such a creative practice, demanding flexibility, humor, and the willingness to make mistakes and try again. We discussed ideas from Connecting in the Land of Dementia, including incorporating singing, laughter, and art into everyday life. We also explored the power of nature and talked about unique concepts for bringing the outdoors inside. We brainstormed different ways we could prepare food together and connect in the kitchen.
Here are some extra ideas we learned from our audience. I’ve changed the names to protect people’s privacy.
Anne’s father, who was normally very active, became very upset when his care facility had to temporarily curtail his movements, due to a flu outbreak.
“I want to go to the hospital,” he told the care staff repeatedly. Finally, they called Anne and asked her to come over.
“Dad was just wild,” she told us. “So I asked him to take a deep breath with me, and told him we were going to watch a basketball game before we problem-solved.” They watched an hour of basketball, which soothed both of them.
“I want to go to the hospital,” her father said.
“Why?” she asked.
“So I won’t feel alone,” he said. “I’m scared to be alone.”
Anne realized how social her father was, always walking down the hallways, greeting people, spending time visiting. She instantly began to problem solve, getting permission to walk down the corridors, wearing protective masks, gathering phone numbers of her father’s friends at the home, so he could call them.
“Taking a break and doing something soothing first really helped us figure out the problem and then solve it,” she said.
Before her dementia advanced, Sandra’s friend loved singing in the church choir. Now, when Sandra visits her, her friend frequently asked the same question over and over. Sandra turns to beloved hymns they both know so well and when her friend becomes anxious, starts singing to change the energy. Soon, they are both singing, as they have for so many years, the old hymns guiding them back to a deep connection.
Patriotic songs inspired Alvin’s father, Fred. So often, Fred literally tuned out the singers who came to entertain at his memory care community. One day, the group began singing “The Star Spangled Banner,” Instantly, Fred stood and put his hand over his heart. He sang along and kept standing and singing through all the familiar patriotic melodies. Afterwards, he talked about his time in the service, breaking his usual stoic silence.
At the end, we all felt a sense of renewal and companionship. Sharing these important creative ideas had enriched our lives and inspired us anew.
I’d love to hear your ideas for staying connected. Please email me at firstname.lastname@example.org.
For more information about the Northland Shepherd Center, visit http://northlandsc.org/about-nsc.html
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.