Monday, June 15, 2015

Trajectory lines and how it will be

Five weeks ago, Mr. PNU's neurologist at the hospital took me aside and explained what he believed was our projected outcome. He drew a graph, much like the one above, to illustrate expected recovery time and possible physical and cognitive gains. Except, on his graph he drew several lines of trajectory, referencing the fact that while stroke is common, outcomes are diverse. 

He plotted my husband's line beginning much lower on the Barthel Index—somewhere around the 10 or 11. Based on the first three weeks of observed recovery in the hospital, the doctor drew my husband's rate of increase over the first 12 weeks peaking around the 12.

It was easier then to just suck it up, nod, and begin preparing for the remainder of his lifetime in the nursing home. I can't explain why. Those first three weeks I pulled off with a stoic grace I didn't know I had. Now, as we come to the end of the first two months of recovery and the curve of our trajectory line is beginning to bank toward its eventual resting place, I'm experiencing frantic jolts of dread, and I sometimes catch myself thinking, This can't be it.

Mr. PNU and I lay in bed for a long time last night, talking about how far he's come. For the first week or two, I thought he might drool for the rest of his life. I learned that I had no problem wiping his lips and kissing him if that were the case. We've moved beyond that. Then I thought the feeding tube might be his future, and I learned I had no problem showing affection if that were the case. Again, he has regained the ability to eat soft foods, and we've left the tube behind. Next, I thought we might never read together again, and I found he could still delight me with his wit and intellect if I was the one reading the words aloud. Mr. PNU is reading Taylor's Sources on the Self on his own, Plato's Apology with me, and still lets me be the one to read passages from the Book of Mormon each night. Right now I suspect he may be in adult briefs for the rest of his life since moving him to a commode takes at least two people and considerable effort. And I have learned that I have no problem holding the plastic urinal so that he can urinate in bed without a mess; nor do I mind being the one to clean him and change the brief if necessary.

Reality says our lives can continue this way, and this may be it, even though no one wants it to be so. 

But I wonder. What gains are possible in the next four weeks? Will Mr. PNU continue to require the help of two strong people to get into a sitting position, to get into a wheelchair, to stand for a minute and thirty seconds? Because as long as this is the case, he can't come home. I'm not physically strong enough to do the work on my own. His therapists are already concerned that I may injure my back moving him about by myself when aides and nurses don't come when called. And a home health nurse is more expensive than keeping the private room at the nursing facility.

Four weeks remain before the banking line tapers to a plateau and we can reasonably define the "it" for the rest of my husband's life. 

So of course I'm considering wild options for possible recovery benefit. Omega-3s, vitamin B complex, radical supplementation, medical marijuana even, anything to keep that line pitching up and to the right. Of course I am. Because at the end of the next four weeks, I'm the one who is wife and life companion to the man who lays in a nursing home bed all day feeling as though he's only half a human—and that simply cannot be.

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