Cindy, a Sunrise nurse, stopped me as I was entering and she was exiting yesterday afternoon. She wanted to know if I was aware that Jeff was having swallowing problems and we shared the basic acknowledgment that, in terms of disease progression, any semblance of a plateau is long gone.
The swallowing issue was not something I’d seen. I noticed something like that once, a month or so ago, but not recently. And most of my attempts to do breakfast duty lately have found Jeff still in bed. So, yesterday, I returned at dinner. He scarfed it without problem. So swallowing is not consistently unreliable. Eating napkins, should his hand happen to grasp one, is...all part of his being in a very primitive, infantile state, reflex-wise.
I will try again for this morning’s breakfast time. But he does sleep often, if not mostly. When not horizontal in bed, he is most often parked in his wheelchair, somewhere. At his most alert, he might look at you, and you might get a smidgen of a smile. He may mumble a couple words. You probably won’t understand them, and they may not be words at all...just a syllable, repeated, sometimes.
I don’t fear the falling possibility so much now. When he could stand, there remained the risk that he would bash his head on something, and bleed profusely enough that the night staff could not resist their urge to call 911, despite the firm decision--affirmed by family, doctor, Sunrise nurse staff, and Hospice--that he should remain in place with comfort measures provided.
I still see the impulse to stand and “do something.” But what remains of it is his hands feeling the sides or arms of his chair, and a slight push. That’s as far as it goes. He is undisturbed. The memory of the thought that gave way to that push was fleeting, and it doesn’t seem to trouble him that the follow-through action fizzled.
Today I will haul in a bag full of disposable undies, wipes, and bed pads. The pads, in particular, have been disappearing quickly, as one is used for each underwear change.
There’s so little more to say about this. You just go, and you give a few loving words and a back rub, because that’s all that’s left to give. Beyond that, you just have to care for what he’s leaving behind, and that’s people. Because you know that’s what he’d be trying to do if those “do something” impulses could lead to anything.
