Living art and Giving art in Alzheimer disease

My grandfather taught me my first lessons in the art of giving care. While Grandpa was not a professional in healthcare or art, his time as site manager at a French pharmaceutical company in Vietnam inspired his personal hobby of illustrating human anatomy and nature. This knack reflected in his later drawings while living with Alzheimer disease. We repeated the same conversations and drew the same pictures as our time-honored script and art, though Grandpa still had new lessons to give on the art of living with Alzheimer disease.

One spring afternoon, I came home from school to find a gift on my desk: Grandpa's illustrated anatomy of his heart (2006). He signed on the back, “For Michael.” I ran to thank him and we added it to our art collection.

Five years later, after months of misplacing hats and forgetting appointments, Grandpa was diagnosed with mild cognitive impairment. Neuropsychologic testing demonstrated deficits in episodic memory and logical reasoning. Magnetic resonance imaging revealed atrophy of limbic and retrosplenial regions, supportive of the diagnosis of Alzheimer disease (2011). Our family rallied together, extending our minds to support his.

The years passed and as expected, Grandpa's cognitive impairment progressed. Seven years from his initial diagnosis, Grandpa required substantial assistance in his activities of daily living, but he still enjoyed drawing. One weekend, I asked Grandpa what he wanted to do. He assembled pencils and crayons so I asked him what he wanted to draw. He pointed to his chest and declared, “Draw a heart!” Midway through, Grandpa dropped his red pencil and exclaimed, “Why am I drawing this? This is ugly!” I said this was lovely. He stood up and thrashed. “Why am I drawing this?!” he shouted. I said this drawing was for him. He looked at me, expressing remorse. “Not for me. This is for you.” he replied. Grandpa steadily sat down, picked up a crayon, and continued drawing his heart (2018b).

Two years later, on New Year's day, our family gathered but Grandpa seemed isolated. I invited him to draw one of his favorites, his brain. He nodded. Pencil and paper in hand, we sat. Minutes later, Grandpa dropped his pencil and asked, “What am I drawing?!” I said it's a fine brain. “Why am I drawing this?!” he hollered. I said he liked to draw. “No, I don't like to. Stop asking me!” he responded. I said this drawing was for him. “No,” he accused, “this drawing is for YOU!” He picked up the pencil and yelled, “Now THIS is for you!” slashing graphite lacerations over his paper cortex (2020a).

Grandpa made me reconsider our art and script. If someone no longer enjoys an art, what can their caregiver do? If a patient no longer appreciates a script, what can their provider do?… Patients, caregivers, and providers must adapt to evolving needs. As Grandpa met drawing with indifference and frustration, we found new activities. We chatted. We listened to music. We sat silently. We smiled together. Ultimately, we were each right. I considered this art to be in Grandpa's best interest, passing the time with what he had enjoyed. Our art was for him. Yet, I held onto these time-tested practices to calm us both. In that sense, our art was for me too. As times changed, so did our living art.

Grandpa's final drawings were unexpectedly abstract and literally verbose (2020b,c). He decorated his heart and brain with the Vietnamese words “cho” meaning “to give” and “con cháu” meaning “children and grandchildren.” Months later, Grandpa died of medical comorbidities, though he lives on through the art he gave us. I'm reminded of William Osler's 1905 L'Envoi address at his farewell dinner with American physicians before leaving for Oxford; “What the future has in store for me, I cannot tell… Nor do I care much, so long as I carry with me the memory of the past you have given me. Nothing can take that away.” Nothing could take away our memories of Grandpa; after all, we have his art.