His First Year


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September:  The crisis

You'll notice that this is one of the longer chapters in the book. Which is curious, because usually we think of a 'crisis' as a discrete moment or event, which happens suddenly.

But here is a deep truth to the care-giving experience: There comes a point where you enter into what feels like a perpetual crisis. And that period will last a long time – longer than you think possible.

The routines which you had carefully constructed to help your patient and yourself cope with the effects of the disease no longer need regular tweaking; they start to completely break down. You're no longer sure that you can cope with the situation. But you do. Mostly. Sometimes you do lose control. Sometimes you lash out. Relationships which were stressed before show signs of cracking. Things grind on and on, and the exhaustion which you were feeling before – which you were certain you could not continue with – becomes an unremitting, constant companion.

You start to become desperate for some kind of solution, some kind of help, some way to get out of this impossible situation. But your patient needs you more than ever, as the disease relentlessly progresses. You're caught in the perpetual crisis, and you will likely be there for months or even years.

The not knowing how long things would go on was in many ways the worst part of this phase. As I would at one point tell a hospice counselor “I can sleep on broken glass for six months, if I know that's the end of it.”

But I didn't know. Neither did Martha Jr. Neither did John and Kathi. And the experts you talk with can't really provide any answers. You ask, and they'll give you a range of times – “perhaps 6 to 8 months” or “about a year.” But then they'll add “but that can vary greatly from individual to individual.” At one point a doctor told us that Martha Sr had already lasted much longer than he would have expected.

When this sinks in – when you realize that there are no reliable answers – it feels like you have just been abandoned. Then all you can do is just get through it day by day. And some days are much worse than others.


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