Moments of Clarity When Caring for a Loved One with Alzheimer’s
BY DANIEL C. POTTS MD, FAAN
Toward the end of my father’s life I watched The Notebook, a movie based on the book by Nicholas Sparks. That’s when I finally understood something.
I had seen my mother and many other care partners striving to tease out moments of clarity, of recognition, of special memories that could be shared even late into the course of Alzheimer’s and other dementias. Something that would restore, if only briefly, the spark of a relationship that had been present in earlier times.
In Nicholas Sparks’ story, a caring husband reads to his wife from a notebook she had written about their love story before she lost her memory, with the hope of seeing a spark, a light of recognition, so that things could be the way they were before.
It finally came, and I understood.
After Dad had transitioned into a residential care facility in moderate to late-stage Alzheimer’s, my mother continued to visit him lovingly and diligently. During those visits, she would try to remind him of who he was through reminiscence, as well as by speaking with him about family, friends, important milestones of their life together, happy occasions, etc.
She would speak to him about their wedding anniversary, about who his best friends were, about joyous family get-togethers and trips, and similar things. During the last few months he was with us, Dad became less able to respond with words and often just blankly stared at us. In fact, verbal responses became rare during those late visits with him.
One day while my mother was at the facility, she was reminding Dad of their anniversary, of his birthday, and of his best friend’s name. Dad was offering no response.
Finally, she asked, “Lester, honey, how old are you?”
Briefly, the fog cleared and Dad’s spirit and sense of humor lit the room.
“Not as old as you!” he replied, saying nothing else for the remainder of the visit.
We have laughed and laughed about that over the years, and his response taught me a lot.
One thing it showed me was that people living with Alzheimer’s and other dementias may be much more aware than care partners might think, even late in the course of the disease. We should never say anything in their presence that could be upsetting, make them feel “less than,” or have any effect other than to be of comfort and build them up in their present state.
It also showed me that essential traits of personhood remain. Dad’s sense of humor was always keen and endearing, and there it was, still making us laugh.
He was also a man who possessed a good bit of pride in his identity and his appearance. He still carried a comb in his back pocket well into the course of Alzheimer’s, and kept that full head of white hair looking sharp. In reality, he was six years older than Mother, but that day he may have felt the need to assert his youth again.
Most importantly, I have learned that memory and recognition are not essential for meaningful relationships and joyful interactions. Relational energies are found at a much deeper place.
It is not necessary to develop a connection based on remembering facts, faces, and events. However, it is essential to get in touch with the humanity of another by tapping into our own humanity.
We must make ourselves vulnerable, open and uncluttered, willing to enter the present moment with no judgments or expectations, except that of finding another person who needs us.
It is true. Persons living with Alzheimer’s and other dementias may not appear to remember us, and this will hurt. They may not be able to recall that special occasion that meant so much to us, but there they are, present with us, capable of a deep connection. In fact, they (we) need one.
Gently touching, singing a favorite song, maintaining eye contact and smiling, holding a hand, and having compassion and shared affection in the moment can prove that joyful interaction is still possible.
And thus come our own moments of clarity.
ABOUT THE AUTHOR: Daniel C. Potts, MD, FAAN is a noted neurologist, author, educator, and champion of those with Alzheimer’s disease and other dementias and their caregivers. He was chosen by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, serves as an AAN national media spokesperson for issues concerning Alzheimer’s disease and other forms of dementia, and is a faculty member at both medical schools in his home state of Alabama. Inspired by his father’s transformation from saw miller to watercolor artist in the throes of Alzheimer’s disease, Dr. Potts formed Cognitive Dynamics, a foundation dedicated to quality of life improvement through the arts. Dr. Potts has co-authored A Pocket Guide for the Alzheimer’s Care Giver with his wife, and fellow Architect of Change Ellen W. Potts, MBA; Treasure for Alzheimer’s with Richard L. Morgan, PhD; and Finding Joy in Alzheimer’s: New Hope for Caregivers with Architect of Change, Marie Marley, PhD.
More Stories from Our Caregiving Community
As the leader of one of the largest synagogues in the world, Rabbi Steve Leder has comforted thousands of grieving families who've lost loved ones. But as he tells us in the following excerpt from new book, The Beauty of What Remains, it still didn't prepare him for...
Co-founder of the Fox Valley Memory Project, Susan McFadden, Ph.D., believes dementia friendly communities benefit everyone. Here's why -- and what communities can do to become more dementia friendly. WAM: In your new book, Dementia-Friendly Communities: Why We Need...
In the WAM Weekly, we asked superstar Gerontologist and Chief of Geriatric Medicine at UC Irvine, Lisa Gibbs, MD, how the pandemic has impacted the millions of Americans caring for someone with Alzheimer's or dementia. WAM: Caregiving is stressful under the best of...