For the second time in the space of 15 months, my brother and I are renewing acquaintance with hospice. Our mother went under hospice care late last week in a small facility in Wood River. I can’t imagine mom ever envisioned that things would come to this in a declining small town of 1,204 hidden away in central Nebraska.
The question we ask ourselves is ‘when?’ but there is no certain answer. I don’t want there to be. All we know for sure is that she has slipped very far very fast.
If the situation is looked at only from quality of life standpoint then what will eventually happen will be merciful. Mom is thankfully in no real pain, there is no known disease present beyond the numerous small strokes that have accumulated to bring her to this sorry stage of life. She has simply no more gas in her tank. Even so, I told Ellen and Reid on the phone and by letter that we don’t know what she is thinking but we know that she is thinking. Her facial expressions – a nice smile or a knowing roll of her eyes – is evidence enough that she still processes a sizable portion of what she hears. My time with her last weekend was devoted to stroking her hair, talking to her about the old times when we were growing up as kids, and watching her green eyes. There’s still some life there. It’s just that we don’t know how much.
My brother and I have had pretty much the same muted reaction to the long goodbye. It is some mixture of stoicism and relief (for her). If mom has taught us yet another lesson, it is to get the most out of what we have left, too, but that when our own end stage of life arrives, neither of us wants anything dragged out. If there is a plug to be pulled, the kids can kiss me on the forehead then yank the cord.
August 30, 2011
Ellen/Reid: It was a pretty melancholy trip to Nebraska these last four days. As you can imagine, it’s tough to watch your grandmother deteriorate over such a short span of time. Everyone, and I got caught up in it too, tries the guessing game of how much longer she will be among us, but it’s not up to anyone beyond the higher source who will make that determination in due time.
I really wasn’t prepared for the difference between last spring and now. She has just gone downhill so rapidly. She’s not ambulatory in any way. There is no more walking let alone sitting up without significant assistance. But you know, she can look up at you with those green eyes and you can tell that she is absorbing information to the degree that she can. I spent a lot of timing just looking into her eyes, stroking her hair, and watching for her reactions. If you say something funny she’ll roll her eyes and maybe nod her head approvingly. Sentences or a short string of words are tough to come by for her and at most she can get out a couple of labored ideas but you have to be listening attentively. What warmed my heart was she distinctly asked “how are the little ones”, and when I gave her the updates about you two knuckleheads she would roll her eyes approvingly or smile. That was incredible. If I hear no other words from her, at least I have her final ones: “I love you” (along with “Drive safely”). She can also give you a little kiss on the cheek, and before I left her room I made sure to get a couple of those.
She spends almost all her time by herself. When the staff puts her in her wheelchair, they roll her out into the common room where the TV is attuned to whatever it is the staff wants to watch. She can’t see far enough, let alone hear the TV, to make much of a difference. But at least she’s out among ‘em and whatever that is worth is okay. None of us really knows what is going through her mind, and perhaps she’s taking more away from “As The World Turns” or whatever soap or news program they have on, than we know. I hope she is.
Your uncle and I have decided that when the time comes, hospice will come to her instead of her to it. That’s how we did it with your grandfather last summer and that worked out just fine (given the circumstances). She’s not in any particular pain or discomfort, other than the same prone position in bed or sitting in her wheelchair, so there’s not much necessary in terms of pain meds or anything of that order. In some very major ways, that’s a blessing. She does wince a bit when she wants to roll over or move, but that’s to be expected. You’d do the same if you were in the same position 24/7. Our layman’s view is that we seem to think she’s just running out of gas, pure and simple. Like your grandfather, her appetite is mostly gone and they keep her going with a few sips of protein drink since she cannot feed herself or really chew solid food. But she still has those green eyes and you can see something going on behind them. She’s trying to hold her own and keep on keeping on as best she can.
When I left her Sunday afternoon, I wondered if this was the final goodbye. I’m relatively at peace with things; her husband is gone, she’s incapacitated and she’s largely in no pain, she knows her kin have largely done okay and that her job as a parent is fulfilled in a good way. I suppose what we should do is remember her as she was, not as she is. There is no other way to approach it. Life has taken its turn with her. She’s had a good one and now is the time for it to end. It was great that you both had a chance to say something in her ear on the phone. She would respond and smile as you both took turns. That’s when I knew I could leave her on good terms for the both of us.