There was a package on our doorstep today from my mom. I thought it might have been a belated birthday present; it was a large manilla envelope obviously filled with a random assortment of items. It turned out to be a collection of letters, papers, holiday cards and a decades old cassette tape*--20+ years of letters my grandmother had saved.
Tucked among the numerous envelopes was a letter entitled "Glenner Journal Entry". When I was in nursing school, I did some volunteer work at the Glenner Alzheimer's Center here in San Diego. Apparently I had to answer a questionnaire after my time was over. My mother thought G.G. would appreciate it so I had sent her a copy. I'm glad I did. I had forgotten this story until today and I'm not sure I would have rediscovered it on my own.
My grandfather had dementia for years before he passed away. My wife's grandfather recently passed after a short period of increasing dementia. I often run into older patients at my hospital experiencing early to late-stage memory issues. There is no way to describe the emotional and physical toll that caring for a loved one suffering from dementia can take on family and friends. The Glenner Center is a day-care facility where families can bring their loved ones to be cared for, fed, exercised and socialized while the family's take care of necessities or simply take a break.
Among the often heart-breaking challenges I saw every day, there were moments like these that reminded me of the importance of empathy and communication--with, and especially without, words.
[Names have been changed for privacy.]
Glenner Journal Entry
Question #3: What were your reactions/responses to the experience? What specifically did you learn?
I spent all day in a state of laughter, accentuated periodically by whiffs of melancholy. In the three days I've spent here, I've connected with everyone in some way--staff and guest alike--and the thought that I may not get to experience them again made my heart hurt. Two men in particular touched me. Neither can clearly communicate with words, yet share themselves through subtleties of body language that have been buried in a society that often hides behind spoken words and guarded emotions.
Hugh smiles. Always. It's a smile that tells you that the onset of this disease may have stolen a part of him, but it also freed the essence of who he has always been. Without provocation, he will reach for your hand, pull you toward him, and utter, "Thank you" or "God bless you." The words radiate from his heart to his eyes and shine a warm glow over you. It's an unconditional "thank you" just for being, and sharing this life with him. Simply knowing Hugh exists makes me happy.
Charles, though, says almost nothing. He sits in his chair and dozes most of the day. When he reaches for you, it's often for support, as his shuffle is slow and precise. Yet so much gets translated through his grip and his quiet eyes. You are there for him. He trusts you. He has to. When you express to him the genuine happiness you feel when you see him, a close-lipped smile will spread and his quiet eyes will lighten. If he is standing next to you, he will slip a hand around your ribs, pull you close, and lay his head against yours. Often, around 3pm, he gets tired and is ready to go home. He will take you by the hand and encourage you to come with him. It's the only time he leads you with any assertiveness. His goal is the back door and the rear gate, outside which he believes a bus will be waiting for him. It breaks your heart to distract him, to find some subtle way to redirect him, because you know what he wants isn't there.
Today Charles was persistent, so we stepped out the door and onto the fenced patio, shuffling slowly away from the gate, through the simple maze of trees and furniture. As usual, I held both his hands and guided him while walking backwards. In an ironic turn, he said, "watch your head," with perfect articulation. I'd almost backed into a tree limb and he'd saved me from a painful thump. I laughed, as much from the shock of him speaking as nearly whacking my head. I was awarded with a close-lipped smile.
We found seats in the dappled shade, hands together. He watched the blowing limbs and periodically clutched my hand the way my mom used to when I was a kid--assuring me she was still there, assuring herself of the same, and somehow expressing the mutual desire for that to never change.
Time came when he was satisfied enough that I could guide him back inside. I could see the apprehension on his face as we passed the gate and he registered that he had wanted something, but whatever it had been wasn't this. After he sat inside with everyone else, he closed his eyes and reverted to the same position he's in much of the day. This time, though, I knew he wasn't dozing because he wouldn't let go of my hand. It made me reassess my belief that he's ever asleep. When I said his name, he opened his eyes and a tear slipped out. I put my hand on his cheek and tried to tell him, as well as I could without words, that I understood. He leaned his head into my palm, clutched my other hand and shared the saddest of smiles.
When his bus finally came, I lead him outside, his earlier desire finally fulfilled. From the bus seat he reached out for one last touch and gave me the rare gift of a full, open Charles smile. After the door slid closed, I stood on the sidewalk and watched his silhouette through the window. It was hard to tell which way he was looking. But then he waved to me. And waved. And kept waving until my own arm was so tired I had to stop.
Both Hugh and Charles reminded me that communication is far more than words, it's intention. It's feeling. It's belief, it's trust, and it's faith. Without those things words are just sounds, and with those things, you don't need words at all.
* = The cassette tape was a nearly pristine, 20+ year old copy of my college band's first album. I'd just been lamenting to some friends about how I never transferred the copy I had to CD and now that copy is pretty damaged. So this package was a belated birthday present after all!