how do you care well for someone you love?

I've briefly mentioned my hospice internship this past (spring) semester — I learned so much, and even offered good care to people (patients, families) who were undergoing profound stress. It was also a very busy time for me; only in my third (final) month did I realize it consumed 50% more time than did my prior internship. So as I drove to patient-visits I would think, "I want to write this out," all the while knowing I wouldn't be likely to do so for a while. This is one of those wants.

Within the space of a week I met two families that I… well… that I filed away in a certain part of my brain after reading their charts. The text within medical charts is its own genre, by the way, necessarily terse but needing to bridge the gap between one clinician’s experience and the next’s. The chart offers hand-offs in our relay of care, so patients and their people are not telling the same things over and over and over and over (there are a fair number of people who come through patients’ new hospice lives at the outset). This is a Good Thing, and as someone who loathes repeating herself, I applaud it. So when I served as a chaplain, I always studied my patients’ charts.

Tuck-in is the term of art ‘my’ hospice uses for the initial meeting between the patient, their family, and their soon-to-be-regular team. The family will have talked to various hospice intake-related people in their peregrination from curative to palliative medicine, but our goal is that — as much as is possible — this nurse, this social worker, this chaplain will care for this patient until they make their transition through to death (or, less often, back out of hospice). For a tuck-in, I would read (research) carefully, so that I would know this patient and their people as much as I could before being in their presence.

For each of these patients, I read: spouse does not want patient to die at home.

It was couched in different terms, with differing slants for each. One chart alluded to a spouse’s feelings of inadequacy and incapability. One chart noted a spouse’s concern around the disruptiveness of death — for their child, a senior in high school. But in both I read a “make it go away,” which in the arc of hospice care is also a “make them go away”… since the person cannot be separated from their imminent death.

I do not want that for my patients, for those under my pastoral care — to be “gone away” in the suffering and the multi-faceted mess that is the end of our mortal lives. (Even tidy deaths and ‘good deaths’ are biologically messy.) At the same time, I care as well for the unhappy ones who will be surviving. So, yeah, I had some (judgy) thoughts… and I kept them to myself, because they’re my problem. Holding a space of God’s unconditionally-deep-with-no-bottom love was my responsibility for these people.
Whom I hadn’t yet met, mind you!

We do everything we can with our words on a ‘page.’ It’s also never the same, and often not enough.

For one spouse, conversation illuminated how they were juggling multiple important (essential) things — caring for their beloved who was in profound, unmanaged pain; continuing the work valued by the employer, which supported a sizeable household; bringing a young adult through high school and off to college, avoiding as much as was practicable a tailspin of grief. This spouse was weighing, measuring, always balancing: what, in the moment, is the family’s wisest through-line? For the other, the uncertainty of facing life without their best friend and bulwark of decades kept washing like storm-waves through their stamina. They worked at a hospital and knew about that sort of proper care… how could that happen in a small apartment? With only one person to care? And who would work the job to sustain a paycheck to keep health insurance and rent covered? At least if their beloved were in a proper caregiving facility, that would be one steady, known, trustworthy thing.

My heart melted twice over. These patients were beloved, cherished people — whose partners, in the midst of learning this new thing of death’s progression, were trying to navigate the most care-filled course they could imagine. That it didn’t match my imagination — my newly-trained, professionally-formed imagination — didn’t lessen the truth of their grieving loves.

**

And then the unexpected happened. Twice over.

I know it was unexpected, because each of the nurses sent out a surprised alert-text:
the patient is dying now.
Not slowly (active dying can take multiple days), but now-now. As we initially met them, each patient had been clearly ill, but not imminently close to death. Death might be a month away? Perhaps longer?
Yet each patient, about seven days after their tuck-in, transitioned from life over to death in the space of a day.

There’s no way for me to know. But I deeply suspect that each of these patients sought to give their beloveds the care they had left to give: release from their uncertainty and juggling.

It is a daunting thing for me to contemplate.

“No one has greater love than to give up one’s life for one’s friends” (John 15:13 CEB), and somehow I don’t think I’ve ever envisioned love’s sacrifices quite in these shapes. O. Henry’s “The Gift of the Magi” is a sweet fable of spousal sacrifice, and I’ve known enough twenty-somethings for my heart to still twinge on their behalf — those gifts hurt, and the wake of the giving hurt plenty, too, and I honor that pain. But what is the twinge, what is the hurt of the gifts of twenty, thirty years or more of marriage… the joint and separate finding a way forward where none of the choices include: you, me, together still -? How would I love my beloved well, in either direction? How would he show his love for me?

We do what we can with what we have.
And when what we have is love, love spills over into everything else.

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