Hospice: Apt or Likely to Change

“However,” the hospice nurse continued while describing a patient, “right now she is very labile.”

Huh?

As the nurse shared additional information about the patient to the rest of the hospice team, my feeble mind wandered. I like to think I’m pretty knowledgeable about words. I keep my dictionary near my desk. I pay attention to new words in the books I read. Searching for word meanings and histories on the web may give me as much pleasure as when a pitcher throws a strikeout or an attorney finds the key witness for a case. But I had no idea what labile meant.

Later (of course!), I looked it up. It’s pronounced Lay-Bile. According to an online dictionary, it means . . .

  1. Apt or likely to change.
  2. Chemistry. (of a compound) capable of changing state or becoming inactive when subjected to heat or radiation.

Now I understood that the nurse’s patient was rapidly changing. Maybe the patient had been able to walk not long before but had become bed bound. Maybe yesterday or last week, she’d been preparing her own meals, but now required assistance. Maybe pain had dramatically increased and additional medications would need to be considered.

In hospice, change happens frequently and quickly. In other words, patients are labile, and rarely by choice.

Hey, don’t we love change? Isn’t that what every American presidential candidate has ballyhooed since John Adams became the second president? Change! Here in my state of California, the June primaries won’t include an incumbent for Governor. Everybody wants to stake out a different path. Old is bad, new is better! Embrace being labile!

Truth be told, most of us can’t stand change. Me? I’ve had my hair trimmed the same way since before Reagan was president. Who wants to pack boxes and move to a new zip code? If you’re going to a restaurant, spending those big bucks, do you want to head to a favorite spot or try that new joint with the, er, weird food? The main character in Ann Tyler’s 1985 novel “The Accidental Tourist” was a travel writer that helped world-wandering Americans identify where they could find “American food” around the globe. While the book was fiction, I’ll bet it truthfully mirrored how some prefer to travel. Who wants to visit France or Egypt, risking money and an upset tummy, to sample the local grub? Where’s my Big Mac?

Of course, there are those who thrive on change. Bring on the new! Let’s have an adventure.

And then, there’s hospice. Please, we pray, keep my mother from pain. Please, we wish, let Dad always be with me. Please, we plead, I want to have time to talk to my spouse today . . . and tomorrow and the next day and . . .

But that damn change keeps happening.

Once, I had no clue what “labile” meant. But the moment I did, I knew I appreciated and despised it. I do like change. And how I resent and resist it. Hospice patients are labile. Their illness will not “improve.” The changes we witness are hard. The changes that come to our beloved may bring a peaceful death, but there are no guarantees. We can make all the right decisions, give all the best support, and the changes—the gentle ones, the unexpected ones, the terrible ones—will happen.

In the grief support groups I’ve lead, people often and inevitably focus on the worst of what happened in the final days (weeks, months) of a loved one’s dying. Those memories can be vivid and burdensome. How can they not be? But, for most, I believe the memories will change. At some point, though the “when” is different for each one, the lifetime of treasured moments and memories will take center stage. What you remember, what you share with others, what brings comfort rather than sorrow, will change.

Change, we reluctantly admit, our jaw or fist or heart clenched, is constant. On the inward and outward seasons march.

But I hope—for patients, for caregivers, for those grieving—that you will also let your love for your family member or friend change . . . by growing stronger, by continuously seeking ways to support the other, and to take care of yourself.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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