Leslie was awake when I arrived to visit with her, and she stayed awake through arm stretches (which she did just fine) and through an animated lunch. She reached for everything in front of her, and put a fair amount of broccoli and rice in her mouth. I was alternately bringing things closer for her to pick up, moving other things out of her reach, and feeding her with a fork and spoon. By 12:30 or so, she’d eaten everything on her plate (chicken, rice and broccoli), and I rolled her chair back to the activity room to stretch her ankles and legs and try to coach her through a little pushing back at me with her feet.
When we got to the activity room, I parked her wheelchair and walked around to the front. I noticed she was once again pretty twisted up–knees and feet angled to the left, torso tipped down and over to the right, pillow under her right shoulder, pushing it forward. She frequently looked like that when I arrived to visit. Usually, she had at least one arm extended forward (to grasp the chair pad or her knees). Her knees would be pressed together against her hand, and her head would be hanging or pulled to the side, instead of laying back. I had seen her drowsy, dozing or resting in some version of that posture so many times over the previous five years that I’d come to see this as her normal daytime in-chair posture.
But this time, it just didn’t seem right to me that she was sitting that way, perhaps because I was also struck by how thin and frail was becoming, and how sober she seemed—not glum or depressed, just dead serious. I wondered if perhaps she was in physical discomfort today rather than just tired and slumped.
While I was taking all this in, Leslie looked up at me in a sober and direct gaze, without any mischief, playfulness or anxiety. She and I frequently looked each other in the eye, but this was different. It didn’t come with the faint smile I was accustomed to. As our eyes locked and held for a moment, I felt she wanted me to understand something about her, but I didn’t know what. She didn’t vocalize anything, and I hadn’t said anything beforehand that she was responding to. But if a look alone could express being totally clear headed, honest and fearless, that’s how Leslie seemed to me. For whatever reason–and perhaps my own projection from seeing her frailty–I wondered if she might be thinking not only about how much Alzheimer’s was continuing to complicate her life, but also how short her life might be going forward.
That was the background to my more prosaic thought that her twisted in-chair position might be uncomfortable. I’d never looked at that position as a loose knot of aching muscles and joints, or thought about the physics of what she was doing. Whether I didn’t was out of respect, timidity or ignorance I couldn’t say—maybe all three—but I had been taking how she slouched and curled in her wheel chair as an angle of repose, a position she’d found for herself in trying to get as comfortable as she could. Following from that, I treated her her twisted slouch as a direct expression of what was most comfortable for her, without knowing—or knowing how to reveal–whatever else she might be feeling that led her into it.
Beyond that, I took the exercises that the Kaiser physical therapist had taught Lisa and me to do with Leslie as the ceiling, rather than the floor, of the physical manipulations we could do with her safely. I trusted those exercises would be helpful to Leslie’s well being in the long run, and she almost always responded at the time by becoming more alert, more upright and flexible, and more animated. That was good enough for me to stay with what we’d been trained to do. I hadn’t considered asking if there might be something else I could do–or should do–specifically to unwind her twisted sitting posture.
This time I decided to give that a try and walked around behind to recline her chair so it would be easier to straighten her out a bit. That took all of 10 seconds, but by the time I got back in front, Leslie had dozed off into sleep or a kind of trance. My first thought when I saw that was to leave. I could just let her rest this time and follow up with the posture insight on my next visit. For some reason, however, I decided to stay and see if I could work with her while she slept.
Over the next half hour I focused on figuring out how to uncurl the twists she put her limbs and body in. Even if she was drifting off asleep, I thought she’d be more comfortable with her wheel chair reclined enough so her head could be supported on the head rest. Why not just move her into that position?
Well, much easier said than done! But after 10-15 minutes of a little pushing and pressing her head back, talking to her quietly, gently suggesting she let herself relax, and massaging the hell out of the back of her neck and the muscles on the sides of her neck that extended towards the front (those were the tough ones), I managed to ease her head back to where it was resting on the back of the chair.
Getting her head to rest “comfortably” (at least that’s how it looked to me) on the back of the chair seemed like a lever for undoing the rest of her twists and turns and for relieving the tension I’d seen in her face. As I shifted her torso around, I was able to straighten her legs and hips a big. I nudged her shoulders straighter, and removed the pillow she’d had under her right shoulder. I was able to do all this without waking her up.
When I left, Leslie was lying comfortably asleep in her reclined wheelchair. She looked more relaxed and peaceful than I was accustomed to seeing her. Her face and hands were free of tension, and her jaw was somewhat slack. This posture, too, was an angle of repose for Leslie, I realized–though maybe not one she could achieve by herself.
Leslie may not have known what I had done with her today, or have any memory of it. But the odds were good that she felt better, and I felt better too. My ministrations had relieved her of what looked like physical discomfort, and I’d found something worthwhile to do with her when she was asleep. I realized, in fact, that I’d been there for her as much in the last half hour as I was during the earlier part of the visit when she was visibly there for me.
Driving home I was mulling all this over and recalled to mind what Lisa said to me before my first visit to Leslie after she moved into KAIROS: “I’m sure she’d like to see you, but she can’t do very much, and if you expect her to entertain you, you’ll be disappointed.” That was five years ago, when options for spending time with her still included going for walks or trips to the mall and having conversations of some sort.
I also remembered how distressed I became when it looked like I wouldn’t be able to take her walking outside any more, and then again when we couldn’t even walk inside. And more recently I’d been distressed about what I could do with her if she was increasingly asleep, in a trance, or in a place of her own imagination where I couldn’t follow.
The truth I left with after my visit today is that Leslie’s still there, even when she’s asleep. She’s there, in fact, all the time–whether I’m there or not–and she deserves good care all the time as well. And the more deeply I can absorb that idea, I thought, the more rewarding it will be for me to with her, whenever I am.