When I arrived at A Kinder Light (Leslie’s second memory care residence) Leslie was seated at Lucy, Vern and Ruth’s table for lunch, facing the window and staring outside. Ruth wasn’t there, but Lucy and Vern were. I checked in with Mercedes and Gina and they said Leslie was doing fine but in one of her “away” modes. I went over, touched her on the shoulder, and sat down next to her, but she continued to stare out the window. When I said “Hello, Leslie. How are you doing today?” she turned slowly to look at me, gave the faintest hint of a smile, and turned back towards the window.
I talked to Leslie a bit while the care staff brought lunch plates out from the kitchen, but she showed no interest in what I was saying or in the food. She just kept staring out the window—intently enough that I got up and looked more closely myself, thinking maybe a deer or another animal had come into view, but I saw nothing more than the parking lot, trees and grass.
I offered her some water, but she didn’t respond. Same thing when I offered food. I continued talking to her, not rapidly but gently touching on different topics in a conversational tone. Nothing I said over the first ten minutes sparked her interest, so I turned my attention to Vern and Lucy, and talked a bit with them.
While Vern, Lucy and I talked, I continued offering Leslie something to eat and drink, but I didn’t push it for fear that might closer her down even more. About ten minutes into our own conversation, Alvin, Holly and I said a few things that Gina and Mercedes responded to from a table across the room, and there ensued a brief burst of lively banter and laughter. When I looked back at Leslie after that, she was looking at me and smiling. I said, “Welcome back,” and set about helping her eat again.
Going forward from there Leslie ate and drank a bit, but without showing any appetite or enthusiasm. If my timing was good, I could get several spoonfuls of food in a row into her mouth, and do that relatively smoothly, over the course of few minutes. But if I gave her the next spoon or forkful too quickly, she’d balk, purse her lips and stare me down.
Leslie had stopped staring out the window by this time, and at moments was a bit more attentive, but she also seemed pre-occupied and troubled. Over the next 10-15 minutes I was able to help her eat and drink a little bit more, but it was very slow going. Every few minutes, Leslie would tip her head down and to the left, hold her face in her hand and prop it up by resting her elbow on the table. Whenever she did, I stopped trying to feed her.
Throughout all this, I continued to talk with Leslie in little bits by making brief comments about topics I thought she might be interested in: updates on Lynne and Joan, news about my brother and sisters, a little something about projects I had underway around the house or anything I’d recently read. But Leslie was unusually unresponsive.
At some point, I just stopped and looked at Leslie sitting there with her head in her hand, eyes shut, and a worried expression on her face. I tried my best to absorb whatever she might be feeling, and something finally clicked—not so much about her as about me. In the blink of an eye, my interest shifted away from trying to draw her out and get her eating and drinking to focus and focused on seeing her and how she was being. My own tension and frustration passed in that moment, and I let out a little sigh.
When I spoke again, a few moments later, the tone of my voice had changed, and so had the pace of my speech. It was as if a somewhat different version of me was addressing a somwhat differen version of her.
“Ahhhh, Leslie,” I said with affection, before pausing briefly. “It seems to me that you’re struggling. And not only struggling, but also frustrated with your struggles. I have literally no idea what you’re struggling about, and I might never know. I just see that you’re struggling. But I’m thinking maybe you’re frustrated because you’re trying to figure some things out, that are really, really difficult to understand.”
Her head was still tipped sideways and propped up on her hand, but Leslie opened her eyes a little at that and looked at me, so I continued stumbling my way forward though speculations about what might actually be troubling her and projections of what might be troubling me if I were in her shoes.
It was in this somewhat more quiet and less purposeful space between us, and with the tasks of eating and drinking set aside for a moment, that the idea came to mind that Leslie might in some way be facing her own mortality. What struck me was more a shadow of that idea than the idea itself, but it left me wondering: Had she somehow found the time, space, lucidity and courage to sense and accept that she was not only not getting better, but had begun a final descent to the end of her life?
I don’t know why I had that thought, or why I had it right then. Perhaps I was projecting my own fears about that outcome, because Leslie had taken a downturn over the preceding month or so. Perhaps that got me thinking about my own descent and death, and I’d projected that. Or maybe she’d intimated something that I absorbed without noticing, a kind of subliminal message that disappeared before it could be acknowledged.
Whatever the immediate circumstances, my shadow of an idea must also have owed something to the numerous talks Leslie and I had over the years—both before and after she developed Alzheimer’s—about death, dying and experiences of loss. When she was nine years old, she led me (a child of not quite five) through dense brush to the edge of the tall bluffs behind her parent’s home and pointed down to where we could see waves of surf crashing against the dark rocks. “If you fell down there you’d die,” she said. Four or five years later she taught me the lyrics to “If you ever see a hearse go by, and wonder if you were about to die.” Fifty years later we recalled those earlier encounters in a conversation that also touched on the frailty and end of life challenges for our aging parents.
I’d also talked with Leslie after she had developed Alzheimer’s about other experiences of loss: the people we both knew who neither she nor I saw any more; our by then deceased parents, aunts and uncles; and people who were not gone, but difficult to see as often as we’d like. Those conversations frequently seemed cathartic for Leslie, and sometimes for me as well. If I noticed she seemed sad and moist-eyed, I would wonder why, ask her about that, and offer conjectures that she might respond to. Whether the conjectures were right or wrong, may have mattered less than noticing her sadness. As I speculated, and recalled to mind some sadnesses of my own, Leslie’s breathing might slow and deepen until, with a sigh, she’d pull herself up, emotionally, look me straight in the eye, and give me a megawatt smile. I’d take that as a cue to say, “Well, you’re here and I’m here. But who would have figured?” And we’d both get a chuckle out of that.
So, maybe Leslie was facing her own mortality when she was staring out the window and maybe she wasn’t. I didn’t know and she couldn’t tell me. But I could see she was troubled, and I thought she was also frustrated. I couldn’t prove any of this, but it seemed as good a place to engage with her—or even a better—than anything else I’d offered up to that point. Why not have a go by taking deeply troubled, figuring out and frustrated a bit further?
“What I mean by that, Leslie,” I continued,” is that the kinds of questions you are now working on are REALLY big ones—some of the biggest questions anyone has ever asked. They might even be questions that no one has ever been able to answer, and here you are, giving them some considerable attention. At least that’s what I think. I really, truly don’t know what you’re feeling, but this is what I’m thinking.”
Leslie lifted her head up from the palm of her hand somewhere in there. I took that as a sign to continue, and so I did. I didn’t have a script for what I was saying, and wasn’t really looking for one. I just kept looking at her and trying to follow wherever the thread she was responding to seemed to lead.
“You know, you’ve done a lot of figuring things out in your life,” I said. “A lot for yourself, and a lot for other people. I know you had to figure stuff out for your mom, Aunt Kay. That’s a safe bet! And you probably had to help your dad figure some things out as well.”
Leslie smiled a bit at that and sat up straighter.
“I’m sure you also had to figure some things out for Donna and Jim. As their older sister, I’ll bet you FELT you had to figure things out for them, or at least try to! And you probably did, because you’re good at that. And for your ex as well, at least when you guys were married—or maybe even before.”
I paused for a moment then continued. “I’m just saying you’ve been really good all your life at figuring things out and helping figure things out for other people . . . For me, too! I mean, you told me what high school was going to be like before I got there. And college! And previewing for me lots more like that. And you still are!”
Leslie was now sitting up straight in her chair, holding her head up, looking at me and smiling lightly, the corners of her lips turned down in a little curl of pleasure.
“But here’s the thing,” I continued. “You’re in a situation now where you don’t have to figure everything out. You really don’t. You’ve done this for other people all your life, but it’s now your turn to have other people do this for you.”
Leslie was still smiling, and with anticipation, as I said, “And here’s what I mean by that: Lisa’s caring for you when she’s here and she’s also totally on top of arranging good care for you and making sure everything is working well with that. And I’m caring for you when I’m here, and the staff here are caring for you 24/7. So you actually get to take a break now, because whenever things seem confusing, or changing too fast or whatever, we’re going to try to help you through.”
I leaned back just a bit after voicing the last of of these thoughts, and as I did, Leslie smiled broadly. Compared to how she looked before my unanticipated and unrehearsed commentary, she seemed relieved, more animated and relaxed. I was feeling some relief as well and broke into a smile of my own.
From that point forward during my visit, Leslie and I played off each other and had a pretty good time together. As she ate the rest of her lunch—with noticeable relish—I switched from the “figuring out mortality” thread to reminiscing about our childhoods. I cleaned up her face, and we rolled back to the activity room to sit for a while, but it was a sunny day, so went from there out onto the deck.
It was breezy on the deck, but we found a sheltered spot that was also sunny where I stretched Leslie’s ankles, knees and legs. I then sat across from her, holding her feet in my hands, and asked her to push them back towards me. She just smiled at first, teasing me by doing nothing. She then settled in and pushed back firmly, and she chuckled when I feigned falling over backwards.
While we were exercising outside, I repeated a few things I’d said at lunch, but in a more lighthearted manner. She was attentive and animated, so I also tried to explore with her what seemed to be a recurring pain along the outside of her left leg.
“Do you still have pain along there?” I asked, rubbing her knee, calf and the “IT” band of tissues and tendons that run down the outside of the thigh. Sometimes this band on Leslie’s left leg was as tight and hard as bone itself. The stretches we did probably helped keep it looser, but from time to time I gently massaged the band directly. I did so with a relatively light touch because Leslie never vocalized or gestured much in response. I wanted to relieve her pain, not add more to the mix, so I was careful to not press too hard, but this time things took a different turn.
As I gently felt the IT tendon and tissues beneath my fingers, Leslie reached over and grabbed my wrist. She pressed my hand firmly against the outside of her thigh six inches or so above the knee, then pushed it up and down along her IT band. I took that as encouragement and applied more concerted force than I had before. I kept my eyes on Leslie’s face, looking for any hint of pain or distress, but all I saw from this more vigorous massage was a beautiful smile, bright eyes and expressions of gratitude and relief.
I told Leslie I was glad the more vigorous IT massage was helping to relieve the pain in her leg, but I was also chagrined I’d exercised with her for over four years before discovering this better approach. As I said that, Leslie reached over with her right hand, grasped my shoulder firmly, and rocked it back and forth slowly while I continued to massage her IT band. We stayed like that for a minute or two while I finished with her leg, then disengaged and just sat there, enjoying the sun for a few minutes.
I left A Kinder Light thinking about the range and depth of Leslie’s feelings I’d witnessed over the course of my hour-and-a-half visit. It was disconcerting at first to see her distressed and troubled, head in her hand and uninterested in eating or conversation. But she didn’t stay in that troubled place, she looked for opportunities to move on, and when she came upon them, she did. That was her process, not mine nor anyone else’s. I was certainly a participant in how we had spent those 90 minutes, but she had found her way into and out of distress while also helping to create—for her and for me—the opportunity we enjoyed later to soak up some sun on the deck and make a nice day of it.
Driving back home I had another thought that was more like the shadow of an idea than the idea itself. This one threw a little darkness around how few choices Leslie has in where she spends her time now and the constant challenge she faces in trying to make the best of wherever someone takes her. Those circumstances and challenges are now radically different from mine, but in time that will change. When it does, I hope I can be as resourceful as Leslie seems to be.