“To love a person is to learn the song that is in their heart,
And to sing it to them when they have forgotten.”
~ Arne Garborg
At our recent Alzheimer’s performance at the Isidro Ayora Hospital in Loja, Ecuador, we shared stories and ideas and learned how these health care professionals were dealing with clients who had dementia.
One nurse described her close relationship with an elderly client. “I feel like I’m a partner with the family in caring for her,” she said.
“I’m interested in integrating more kinds of therapies, such as music and art therapies, into our care,” a doctor commented.
“I’m looking for ways to reduce the stress of being a caregiver,” another member of the team said.
We had a lively and meaningful conversation and we were impressed by their dedication and caring.
If you have tips for reducing the stress of being a caregiver, we welcome your comments and we’ll share them with our friends in Ecuador and elsewhere.
Deborah Shouse and Ron Zoglin,
Family Caregivers, Alzheimer’s Advocates, Writers and Speakers
Follow us on Twitter: @DeborahShouse
Deborah is author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey
The canoe slips through the narrow passageway just as the sun touches the water. As we round a corner, we spot a black-capped heron, poised for fishing, elegant with its delicate feathery head plume, powdery blue beak and long ivory body. He stares at us for a moment and then lifts his grand wings and disappears into the groves of elephant ear trees. Though we see him for only a few seconds, his beauty stays with us throughout the day.
So many times, when my mother was deep into her Alzheimer’s journey, I rounded a corner and had a glimpse of her true depth and beauty. Then, like the heron, she disappeared into her own personal forest. But the image of her shining face and the excitement of the momentary connection remained with me.
This month, I’m going to write about one of my favorite topics—love. I’m asking myself, “What have I learned about love by knowing and caring for people who have Alzheimer’s?” I welcome your answers to that question.
My parents liked to celebrate Valentine’s Day with dinner and dancing. Years into my mom’s Alzheimer’s journey, my parents’ love hadn’t diminished, but my mom’s capacity for going out to dinner and dancing had drastically decreased. I saw how blue my father was—one more event he had to give up, one more change in the woman he loved—and I searched for alternatives that might cheer him up. Here are a few things we tried:
Look for a favorite thing. Seek one simple pleasure your loved one might enjoy. Mom loved potato soup and chocolate and fresh strawberries. These were part of our celebration.
Nurture yourself: include your own favorite thing. Bring yourself into the celebration and include something that makes you happy. I brought foods my father and I both liked as part of our little party.
Pick several ways to express your love. Poetry, music, gifts, flowers, and photo albums—you can use any of these resources as a catalyst to talk about your feelings. Dad and I sang Mom old show tunes and love songs, music she really enjoyed. Mom adored Shakespeare; we had a couple of sonnets on hand. She and Dad had once created a beautiful flower garden; Dad brought her a single red rose.
Take joy in the simple act of expressing yourself. Being with my mom was a chance to really practice the mythical “unconditional love.” Mom couldn’t tell me she loved me. During one Valentine’s Day celebration, she fell asleep while I was holding her hand and talking sweetly to her. But there was a comfort in expressing my love and I kept on talking.
Celebrate love in all its glorious guises. During their long marriage, my father had walked into a room millions of times and often, Mom had been busy and hadn’t particularly smiled or remarked. But with her dementia came a deep dependency on Dad. When Dad walked into a room, my mother’s face lit up. My father basked in that light. The sparkle in my mother’s eyes was the new, “I love you, darling.” The light said everything my mother could no longer say.
Deborah is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.