Sunday, March 6, 2011

I'm not driving this bus.

I'm impatient, and I like to know what's going to happen next.  Surprise parties aren't my thing; I don't really even like to open presents. Those close to me might say I have a few control issues. But this journey we're on with Dad continually reminds me that I am not driving this bus.

My family dealt with a string of tragedies when I was little, and it was up to others to watch loved ones die. With the notable exception of my beloved grandmother, this task hasn't befallen me until now -- and I count my blessings every day that I've been spared so much of the pain that others close to me have experienced.

But that leaves me a proverbial deer in the headlights when it comes to knowing how to make this stage in Dad's life easier, because most days, I have no idea what to expect.

Unlike some other hospice patients, Dad doesn't have a clearly defined or delineated path. Many people who arrive at Kavanagh House pass away within days or weeks of arrival; some linger, and 12 percent to 13 percent are transferred home or to other facilities because their conditions improve. We have no idea what category Dad will end up in; all we know is he's not going to get better.

His diagnoses are renal failure and congestive heart failure. He also makes little sense much of the time. Occasionally, he is very lucid; he responds well to certain people, especially his grandchildren and great-grandchildren, and can be very animated and funny. But much of the time, it's as if he's somewhere else.

If you dissociate yourself emotionally from the process of watching someone's life wind to a close -- and I don't know how you do that -- the signs and signals they tell you about at hospice are interesting and make sense.  The body knows how to take care of itself; it conserves its resources for the tasks it absolutely needs to perform. The person's appetite wanes because digestion is too much work. He craves sleep because interaction is too taxing.

But those symptoms vary wildly from day to day. Last Monday, we didn't expect Dad to last through the night. The next morning, he was lucid and hungry. Earlier today, Dad was animated and cordial with visitors; tonight, his breathing is labored and he is convinced that something is wrong with someone in the family and we're not telling him.

The last thing I want is for him to die. But I wish this whole thing were a little more linear, because I wonder sometimes if my bewilderment keeps me from offering the right responses, the right degree of comfort. I'm continually looking to others for a game plan, and naturally, there isn't one. When he's better, our hopes are up; when he takes a turn for the worse, we believe, inexplicably, that he'll get better.

As a spiritual person, I believe in "God's time," and I'm trying hard to understand what I am supposed to be learning from this process of relinquishing control. In the meantime, I'm blindfolded on the roller coaster, hanging on tightly.

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