A Fine Line

We are on the downhill here, and very far from Torino. My patient seems to be fading incrementally, visibly, each day, and the days can seem like weeks. She was lively (and rather combative) last Friday night/Saturday morning, then crashed. This was not unprecedented; periodic nightmares have destroyed her sleep over at least the last year, and while adjustments in her meds have moderated them, they haven't gone away entirely, and they are exhausting, for both of us. In the last couple of months, however, her body (at 97+) has stopped replenishing itself. Nothing catastrophic - everything still works, there is no raging disease - but it is not fighting so much anymore. It is hardly fighting at all.

If there was a single hallmark on the last 3 1/2 years, it's been the passion of my patient to defy the odds. Manifold arthritis and osteoporosis - longstanding conditions - made her glass-fragile. She took quite large amounts of morphine, daily, but maintained her lucidity and her interest in the world. We watched the 2004 presidential debates together, critically; she paid attention to American Idol on her own. Having been married to a lawyer, she loved courtroom shows, the more lurid, the better (a big Boston Legal fan, for instance).

I've rehabbed her through a knee break and a hip break/replacement - she got through both and was ambulatory (with a walker, and with close care from me) until very recently. The stamina went first, and that infuriated and depressed her. She likes giving orders, but she'd rather do it herself, and only recently has she relinquished her hold on her old determinations. If anything constitutes a fine line between holding to life and letting it go, that one must be signal. For a woman of such will, acquiesence is not a compromise, it's a defeat. I kept hoping it was an aberration, something passing. It seems not to have been.

You take care of a person - body and, to the extent that you can, mind - basically 24/7 for more than 42 months and you are invested in them, their health, their survival, their peace. On many more than one occasion my patient tried to mother me, and I had always to remind her that I already had a mother, and one was quite enough (they met once, finding each other adorable). But closeness and dependence and jockeying and setting boundaries (and seeing they are observed) tend to erode any pretense to pure professionalism - we've gotten on each other's nerves, entertained ourselves, given each other grief and delight. As much as you might want it to end, you also want to see it through. I'll be here until the end, and until the fine line is crossed.

[Update 1: The Sleeping Beauty revived somewhat this afternoon, which delights me, but also reminds me that this is going to be a roller-coaster for a while - and I truly hate roller-coasters (jerk you around, your glasses threaten to fly off, you puke...). I am sure her family will hate it all even more - they were unhinged on Sunday, and they may not be prepared for even temporary improvement. Unless your patient is alone in the world, you are caring for the entire extended family, and they don't necessarily want to admit that, or like it if they do admit. Aplomb, baby, aplomb.]