Monday, October 31, 2011

A Moment of Clarity

They're fewer and farther between these days, those moments of clarity my dad has. His progress has been steadily downhill. He stopped walking, stopped standing, nearly stopped eating. Speech is slurred even when he is trying to communicate, so only an occasional word gets through most of the time.

We cope by changing his routines. His bed now sits in the living room, where the futon used to be. Since it takes two moderately normal people or one strong one to transfer him from bed to chair to bed, this makes it easier. He's out where we can see and hear him. Since he doesn't stand up, we no longer put on his pants, but leave his legs covered in a very soft blanket while in his chair. Mostly he fusses with it, taking it off his legs until they get cold, but not complaining about the cold. We watch for it anyway.

His sitting up muscles are pretty shaky, so there's a whole routine associated with getting him to sit in his bed so we can give him water or transfer him to the chair. First, you have to get him to bend his knees. They're stiff as two-by-fours these days, and bending is accompanied by groans. We try to soothe him and apologize for any pain we're causing. Once bent, the knees and feet are dragged over the side of the bed. More groans, making faces. Then we grab his hand and slowly pull him up to a sit. Or something close to one anyway. Balance is not a current skill, so one arm around the shoulders tilts him erect, and we place his hands on the side railing and the mattress side, where he can grip and hold his position on his good days. Even then he's a bit of a moving target.

There's very poor hand-eye coordination, even allowing for his blindness, so on the days when he recognizes the bottle of water and remembers how to bring it up for a drink, he often misses on the first try. When he does make it, he drools some on his lap, and often chokes on what he swallows. He's mostly being hand-fed now, rather than watching him tilt his plate so most of the food winds up in his lap or chair for the dogs to help clean up, or tilt the spoon/fork so ditto. Breakfast is his best meal. Often he'll finish his bowl of oatmeal with fruit. Lunch and supper can be a few bites or a complete refusal. We don't force it. Sometimes he'll eat a cookie instead. Lately maybe not even that. He might not stay awake long enough to finish it. Or for that matter, not long enough for his daily phone call from Steve.

We've discontinued his vitamins and most of his meds unless they keep him comfortable. The nebulizer is more of a battle than ever, and mostly we hold it. On his good days he keeps pulling it out to look at it, or possibly to make sure we're paying attention to what he's doing. Even if I'm pouring coffee, I can hear the difference in sound from the next room when he takes it out of his mouth. Lately we hold it just outside his open mouth and trust his breathing will suck enough of the medication in to do some good. He's been known to knock our hand aside, whether holding nebulizer, pills, or coffee. He treated himself to a fairly warm lapful the other day.

With all that, this morning was a complete surprise. I'd just gotten him to the sit-up-and-balance phase of his morning routine, when he asked, "What's wrong?"

"What do you mean?"

"I find it hard to wake up, you come and go, Paul comes and goes. Am I dying?"

We've avoided that word in his presence lately. But this time he brought it up. He deserved whatever he could grasp of the truth. I sat next to him on the bed and put my arm around his shoulder. Partly it was to help him balance, partly it's because I've learned that touch can keep him focused for a bit. It worked years ago with kids, a light hand on their hand or arm while you talk to them, so I'm doing it with him too.

"Yes. You've been working on dying for seven-eight months now. At the moment you're just further down that road. You might last a few more days, or several more weeks. But," - answering the question he hasn't asked but I figure he likely would if he could frame it - "we're going to keep you here at home with us for however long you have. You won't be going to a hospital, or to a nursing home. You'll be with family." It seemed to satisfy him.

Or perhaps by then he'd forgotten the question.

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