Sue and I loved our rural neighborhood with its long, wooded driveways. We took walks on our street, exercised together, and had typical neighbor conversations. She, being a writer of children's stories, edited my amateur writing. But when Sue developed recurrent atrial fibrillation in her early 80s, she called upon my nursing skills. It was then that I noticed she was forgetting to take her meds. As time went on, she had a pacemaker insertion, and a hip replacement, all the while showing increasing signs of dementia.
I became that RN who checks on her neighbor regularly and accompanies her on each hospitalization. We hired an aide for her companionship. I became the unofficial coordinator of her medical care, handled her bills, and communicated her progress with distant family. But most importantly, I was and have remained her friend for almost 40 years.
As time went by, Sue struggled to remember important family names, her earlier life, the books and children's stories she authored, and her extensive college education. She enjoyed rare memories of being a university professor who taught the skills of teaching reading to elementary school teachers. Mostly, Sue sat in her recliner, content to play solitaire, read short books, watch tennis, and nap. She especially loved watching nature in the woods around her home. Among the tall oak trees were birds, wild turkeys, and our personal favorite, the white-tailed deer. One duty of the aide was to put out corn for the deer!
Numerous travel photo albums sat on Sue's dusty bookshelf. There was a time when her journeys to other countries with friends were stories she told her students about. She'd made trips to Africa, Asia, Europe, Central America, the Caribbean, Australia, and the Galapagos Islands.
"I was so lucky to be able go on these trips," she would say as she looked at the pictures. In her later years, she rarely remembered these travels.
She still had a brilliant 89-year-old mind that shone through her hazy memories in the charming way she spoke and interacted, even though she forgot the conversation 10 minutes later. She could reason at a surprisingly high level and created fascinating stories even in the midst of her middle-stage dementia. One day, alone in Sue's home office cleaning, I noticed a large plastic box of loose photographs. They showed happy people dressed in shorts and colored shirts. One unlabeled picture showed Sue holding a walking stick, posed beside a huge tortoise, wearing a hat and a big grin. It had to be her Galapagos Islands trip.
I remember that story! I thought. There were oystercatchers and blue-footed boobies, sea lions and tortoises. There was Sue zip-lining! I remembered the zip-lining story and how she stopped halfway across, embarrassed when the guide had to help her the rest of the way. I placed the pictures in Sue's lap while she sat in her chair.
"Sue," I said, "if I show you pictures of one of your trips, will it make you sad because it's hard to remember or will it be fun to look at?"
She lit up. "Show me," she said. "I will remember." So I sat down and we started to look through the pictures quietly together.
Then the powerful storyteller in Sue emerged. Her eyes sparkled like they did when she read one of her stories aloud. I felt a childlike excitement waiting for Sue's tale to unfold. She examined the Galapagos Islands pictures carefully, describing each photo with confident precision as if she really remembered every detail in them.
Some details she really did seem to remember. She whispered, putting her index finger to her lips, "They told us that the turtles scare easily, so we had to whisper." Pointing to a bird's blue feet, she said, "This bird was one of the most beautiful birds we saw." Her animated voice made the pictures come alive. But pointing to herself holding the walking stick in the photo, she looked confused, and asked, "Is this me?"
I watched Sue and pondered her feelings. If she truly remembered her Galapagos trip, that was wonderful. If the storyteller Sue created her own story for each picture, it was great fun for her. Did it really matter which scenario was true? No. What mattered was the joy Sue felt reliving the story of each picture and sharing that joy with a friend. It was the actual telling of the story that made her happy.
What Sue taught me about dementia that day is that what a patient recalls and what a patient creates comingle, and it is the joy of that creation that becomes a precious gift for the teller and the listener alike, even if only for a moment.