It is a beautiful sunny day when I pull into the parking lot. I run the security gauntlet and make it inside the lock-down wing. The inside looks beautiful, especially compared to other facilities I have visited. It is brightly lit and spacious. The vaulted ceilings are very high and a long wall of windows lets in lots of natural light. A glass door across the very large common room leads to the outside where there is a small grassy area enclosed by an 8-ft tall black metal picket fence. In spite of this invitation to enjoy the outdoors, I realize that the door is locked. As I watch, a female resident approaches the door to the outside and pushes repeatedly on the bar, but it does not open. She becomes agitated and begins to yell. She calls out for help, cursing and yelling that she is being held prisoner. “I want to go home,” she wails. No one, neither staff nor resident, seems to notice and she eventually moves on.
Other residents, both men and women, are seated on sofas and chairs facing a large screen TV, at which they stare. There is no conversation; they simply sit. Suddenly, a door from one of the administrative offices lining the wall flies open and a facility employee bursts forward. As she sweeps toward the group of residents, she yells out, “Sweet baby Jesus! Where is….” She has seen me and clips off the remainder of the sentence. She quickly collects herself. “Mr. Tilson, come here,” she demands in a lower, calmer voice. I fight the urge to follow them into the office as she closes the door behind them. Mr. Tilson has no advocate and will face whatever is to come alone.
On the far side of the room are two long dining tables. A female resident gets up to help the employees setting the tables for lunch. She has probably been setting the table for meals since she was a girl. Perhaps, as a mother, she daily set a table for her family. Later, it would be herself and her husband. Now, when she sees a table being set, she gets up to help. The employees tell her it is their job to set the table. She is in the way, they tell her. She is slowing them down. How can they get their work done with her endless interference? The woman becomes confused and agitated. She fumbles with the forks and spoons, which are each wrapped in a paper napkin. Eventually, a staff member marches the woman back to the common area, seats her in a chair, and instructs her not to move.
Across the room I see my clients, both seated in wheelchairs pulled up to a square table in a far corner of the huge common room. Unlike the other female residents, these two ladies have their hair and makeup done. Today both wear sparkling hair bands. They are fully dressed in colorful outfits—not sweat suits like so many of the others. Private duty caregivers get them ready every morning–overloaded facility employees simply do not have the time. I wonder what affect a little pampering in the mornings has on the well-being of the two women. A bit of the familiar routine they engaged in for decades to start the day off right.
Neither of my two clients is able to walk, speak, or feed herself. One is still able to make eye contact. She looks up coyly with a sweet, shy smile when I take her hand and then quickly lowers her eyes to her lap again. She continues to hold tightly to my hand as I sit down next to her. It takes the hand-to-hand touch to get the smile, without it she simply stares into her lap.
I am here to meet with the two private duty caregivers and the grandson of one of my two clients. The grandson is close to tears, but I prefer to lead the conversation to positive topics. He tells us the origin of the nickname he calls his grandmother and soon we are all telling stories and laughing. In the midst of all the chatter, my client’s grandmother begins to mumble out loud. She is no longer able to make eye contact and does not recognize any of us, but I believe that in her mind she is joining the happy conversation as it flows around her. Suddenly, she chuckles out loud—a surprising, deep and throaty “Ha, ha, ha.” We all stop and stare at her for a beat, then break out laughing. I remain convinced that, on some level, she was aware of the “feel” of her surroundings and responded.
Later, as I prepare to leave, the grandson thanks me. It was like a party at the facility today, he says. That’s the word he used—a party. He is thankful for the pleasant visit. Usually everyone is crying, he tells me. In fact, one of his uncles no longer visits the facility even though he loves his mother fiercely and lives close by—it is simply too upsetting.
I always enjoy my visits to clients because of the difference I image it makes in the course of their day. And not just for my clients but for family members and the facility employees as well. Still, the truth is that I must constantly fight down the relentless image of myself sitting in that wheelchair. Days, weeks, months later—even now—it haunts me. I think back to college, when I could commit huge amounts of learning to memory—with very little trouble, I now realize. I imagine dementia, like a seed it will someday sprout and grow inside my head. How I hate that there is such a thing.