Dementia: Friend or Foe?
Dementia. It terrifies me.
My grandfather died of Alzheimer’s and while I was too young to remember the details, I began to understand the torture of watching a loved one’s mind slowly fall away when I saw the pain in my father’s eyes.
Now, as a hospice caregiver I am reminded of that look as I watch myself dance with death, dying and uncertainty. It is a challenging, humbling and powerful teaching on impermanence.
For some months I have had been visiting “Lisa,” a resident with advanced dementia. Lisa is a petite Asian woman in her 80s with glossy jet black hair punctuated by a few strands of grey, sparkling cat-eye lined eyes, and a smile devoid of most teeth. Lisa was once a classical singer in her native Korea and still carries the poise and dignified elegance associated with the craft.
Though her room is sparse, she has breathed life into it with colorful plastic flowers “plucked from her garden,” a few carefully placed family photographs on her shelf, and small framed paintings on the wall.
One recent afternoon, I walked into Lisa’s hospital room and found her weeping inconsolably. Despite the fact that I had introduced myself to her on multiple occasions, she did not remember me, though she appeared glad to have the company. When I asked what was wrong she said that she wanted to die by swallowing 100 pills or jumping in the ocean, that she hated her “house,” was quickly losing her money, and worst of all, her kids rarely visited.
I sat next to her on her bed, handed her a Kleenex, held her hand and listened. I had heard this story many times, though she was unaware of this.
When there was a lull in the conversation, I pulled out a fashion magazine. Lisa loved beauty. As we flipped through each page admiring the stylish outfits, her mood lifted, and by the time we turned the final page, she was smiling and animated.
Then, as she customarily does each time I visit, she began to ask me the same, repetitive three questions: Are you married? Do you have children? Is it cold outside? When I’d answer each time, she’d nod inquisitively, pause, and begin the loop again. A bit drained from answering the same questions for over an hour, I gently told her I had to leave. Lisa smiled, waved and said “Thank you Ma’am. Please visit me again. I love you.”
Often, I hear the word “suffering” associated with dementia, and I have always believed it be true. The inability to distinguish between past and present or to recognize one’s loved ones seems like a horrifying jail sentence. However, reflecting on the way Lisa engages with the world I began to wonder: is there freedom in not being able to remember aspects of one’s life? Is not being able to distinguish between past and present terrible? Was I projecting my own discomfort with dementia onto her? Could ignorance really be bliss? I will never know the answers to these questions. Neither will any of us. However, I’m certain of one thing: it’s agonizing for family members to witness their loved one slipping away.
While dementia still scares me, my connection with Lisa has allowed me to grow a bit more comfortable with it. And even though she does not remember me every time I walk into her room, I welcome each moment, as is, with freshness, mystery, and openness…just like she does so valiantly.