Even The Patients Puzzle Over My Offbeat Career

It is one thing for a friend to ask how in the world I can deal with hospice work, but quite another matter when a patient asks me. The way Shirley put it was, “How can you do this job when you have to keep losing people you get to know?” I stumbled out an answer to the effect of Alfred, Lord Tennyson’s “ ‘Tis better to have loved and lost than never to have loved at all.” (No, that quote is NOT by Shakespeare.) To myself, and to my readers here at offbeatcompassion, I will comment on Shirley’s query more searchingly. First of all, it is always of note when a patient says something like that, because it makes me wonder what is behind it, and what it might  have to do with her own feelings about losing other patients she got to know very well and who had died before she did. Unusual for a hospice residence, for one stretch of time, several patients had been pretty alert and visited each other and smoked with each other out in the back before most became bedridden or died. Shirley’s comment possibly touched on her sorrow of anticipating that some day, she herself would lose everyone and everything when her time came.

Anyway, I will stall no longer about how her question applies to me and anyone else who works with hospice patients. Why was Tennyson right?  I think one thing Shirley was implying was, okay, I only get to know my patients for a relatively short time, and this keeps happening over and over, so is the pain of losing them worth the pleasure and experience and reward of having known them in the first place?  The answer for hospice caregivers, as well as for me, is yes, otherwise turnover in this field would be pretty frequent. I once heard at least for chaplains that the average number of years they spend in hospice work is about eight years. That to me sounds plenty long, so there must be a reason for it other than masochism. And it certainly cannot be the pay!

Sure I miss some of the patients I get to know well and find more in common with, like Shirley herself. But the mourning is brief, as the relationships are. When I lose members of my own family, just like everybody else, grieving is not a pretty picture. But I think because patients are strangers and not exactly friends no matter how much we like each other, the grieving is simply not intense or prolonged as with family. On top of that, I must maintain a professional distance in order to think carefully about what a patient needs to talk about and what kind of response will best help them. This leaves me mostly the “better” and easier part of grieving. Such grieving touches on the memories of the interesting things they said or showed me, such as advice about how to relax, pictures of them posing with famous people, or even an audio of a band they played in. At most I may feel wistful about a particularly endearing or admirable person. Writing about some of them in this blog or on Twitter is also an outlet for honoring their memory and my feelings about them.

If you do “this kind of work,” how do you handle the constant leave taking?

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Hobgoblins And Hospice

You would think hospice is scary enough without Halloween decorations in the residence dining room. Some depict skeletons with devilish grins portending what is to become of us all, and others are cartoons of tombstones with R.I.P written on them. The decorations are redundant in this setting are they not? Or at least ludicrous in drawing added attention to the bad situation the patients and families are facing—Come on, this is a hospice residence. Of course the people putting up the decorations were probably just thinking, “Let’s decorate for the holiday,” and had  no inkling about the irony of what they were doing, which is like a very bad pun.

This year for the first time I no longer find it fun to look at Halloween decorations in my neighborhood either. So many show old people with leering expressions and tattered clothing, and witches howling amidst flashing lights, ghosts gesturing to bloodied bodies, and vampires looming over their imminent victims. Maybe because I have worked for hospices for many years, it does not take all that much to skirt the boundary between taking the especially sad and overwhelming days on the chin, and descending into burnout. Or it could be now that I am older myself, decrepit versions of the elderly no longer amuse me. More than ever, I need as much comfort and beauty as I can lay my hands on, tune my ears to, lend my nose to, and focus my eyes on.

I realize that for society, such displays are a way to project our anxieties and dread over ageing and death and an attempt to push them away through caricature. In a way, working for hospice is dealing with Halloween all year long, except even worse, as I am facing loss not at the remove provided by dark humor but instead as the raw real deal.

So hey Thanksgiving themes, here I come!

When A Chaplain Acts Like A Moth

Famed therapist Dr. Edwin Friedman wrote a fable about a moth that was impatient with a fly’s irrational behavior. The fly kept trying to exit a window that was closed by zipping around and banging against the pane again and again. And the moth, doubtless with all good intentions, kept trying over and over to reason with the fly to stop its futile leaping here and there over and over the same territory of the glass, never trying another window. The fable ends with the moth becoming fascinated with a light beckoning in the distance. “The moth fluttered and took wing in the direction of the glow, where it crackled itself to a crisp on an electric arc.”  Ouch! Poor little moth. In a discussion booklet, Friedman says the moral of the story is that the hardest habit to break is to keep trying to break the habits of others.

Um. Guilty as charged. I know I have tried to get family members to stop bad habits and get into good ones, and they have returned the favor. Gentle reader, all of us are like moths and flies in our relationships. “Everybody plays the fool/ There’s no exception to the rule/It may be factual may be cruel.” (Thus the rock band, The Main Ingredient, wisely sings.)

As a chaplain I have to be on guard against this sort of thing happening between me and my patients if I am to “help by not helping,” another favorite aphorism from my trade. When I slip into being a moth, I sometimes find myself encouraging patients or family members who complain about a toxic person in their lives to avoid or otherwise do more to protect themselves from that person’s poison. There was the daughter of a patient who over and over kept expressing her disappointment that her brother does not help out with patient care, and does not even come over to visit. “Whenever I call him on the phone, “ the daughter said, “he doesn’t react even when I hint that he should come over. He makes me feel bad on each call, because he acts like he doesn’t care. He doesn’t care that I am the one doing all the care giving, and he lives close by too.” Oh. The moth and the fly. Because she kept lamenting this at great length, I fluttered to this light of “help me” and no matter what angle I took about her accepting and thus mourning that the brother was not likely going to change and that she would just keep tormenting herself with his lack of responsibility, she just kept flitting to one strategy after another about how she has tried to get her brother to change. Just to keep track, there are now two moths and one fly in this account.

After the visit when I reflected on my mistake, I worried that the daughter would not have me come back because I failed to just let her vent, or say something ironic, which is what I usually do when I am not a moth. That is, I try to keep my distance and not become a part of push-pull patterns so that the sufferer can sort things out for herself. I vowed to do that on my next visit. Happily, she did have me back after a while, and by some coincidence (?) the brother had come over to the home not once but two times since my last visit.

I think the deeper level for why I can get emotional about toxic people is that I was not protected from them while growing up. Once I figured out this tendency, I can take greater care in not getting into the bad habit of trying to break this kind of bad habit of others.  If you are in a helping profession and you find yourself becoming moth-like, it is beneficial to become aware of what kinds of bad habits most likely entice you towards those comfy-looking flames.

The Demise Of Time

Novelist Eric Kraft writes in Leaving Small’s Hotel that if events or periods of time do not have a marked end, even such mundane phenomena as a weekend, or even a day, then time has no rhythm and thus no meaning. I get a taste of what the lack of this rhythm is like from my experience with hospice residences and nursing homes. When I went to work on a recent Sunday, it struck me how that day felt like any weekday. I was expecting a different feel, a different mood to set apart the day. I thought it would at least feel quieter with less staff, somehow slower. Or that there would be say, a Sunday brunch option instead of the usual breakfast, or different kinds of activities than on a weekday, or maybe more informal dress on the part of staff. Nor did anyone seemed surprised that I was there on a typical day off, saying, “What are you doing here on a Sunday?” I actually felt let down. Not only had I given up part of my weekend, I had stepped out of time into a perpetual hell of monotony.

Then I thought about how much worse this must be for my alert patients, and how when I visit them and at times ask what’s new, they  frequently say every day is the same. It came home to me how a lot more than boredom is at stake here when a patient anxiously asked me for a pocket calendar. “I want to know what day it is. Can you bring me a calendar?” When I did, she was remarkably relieved. She took it like it was a gift of great moment and said: “I will mark off each day, and now know where I am and what’s going on.” Before getting the calendar she implied she felt disoriented and lost. She made me realize how strange the artificial environment of a facility is, including the deprivation of a sense of time passing, despite efforts to decorate for holidays and the like. Residents might as well be in a space vehicle between worlds.  (Which reminds me of a concern among some Jewish sages as to how to observe the start of the Sabbath if you were to find yourself on another planet. It cannot make sense to ask what time it is or what day it is except on a purely arbitrary basis such as the actual time it is in a given location such as your hometown.)

We tend to think that endings, however necessary, are undesirable. We may think we want our vacations to go on forever or have a festive occasion go on and on. But if they did, the experience of these periods would be subverted. An endless vacation would be a void rather than a vacation. A festive day that went on indefinitely would cease to be festive. We end up with nothing when we do not place boundaries on events and periods of time such as the seasons.  We remove the meaning that accrues from going forward in time. Perhaps we can restore a sense of a patient’s life unfolding in time by at least referring to how that is happening in our relationship with them. I can mention to a patient how long we have known each other.  I can refer to some of our earlier conversations and how they connect with the current one. I can acknowledge what I have learned from them and that I like to see them and look forward to seeing them again. Relationships with patients are not static; they are evolving. Let us at least refer to that.

Observing this temporal isolation of my patients makes me more conscious of how I should honor, as Eric Kraft urges, the end of such things even as seemingly trivial as one day. I rarely, for example, work on the computer past midnight (though the writing of this post on this particular day is taking me just past!)  I am looking ahead, dear readers, for your responses, in good time.

No Pain Much Gain?

Just think: Suppose I had a condition called “congenital insensitivity to pain.”  This means I could slice my way through mosquito-infested swamps and not feel insect bites. This means I could go on a Polar Bear Plunge as easily as taking a dip in a heated pool and look heroic with nobody the wiser, and romp about in extreme heat without feeling like I was wrapped in cellophane. Best of all, I could impress my dentist by being unfazed by any procedure and brag about not needing Novocaine. “That? Oh that’s nothing. You should see me on the operating table.”  Or  I could consider a boxing career…

Actually this condition is no joke. Not experiencing the warning signs of pain makes serious injury quite certain. But even if in the future I was fitted with artificial sensors for hot and cold and pain so that I would react in time not to be injured, would I still feel deprived in some fashion? Would I be alone in my lack of pain, the way the android  Data on Star Trek: The Next Generation  feels like he is missing out on something by not having emotions, painful as well as pleasant? Setting aside an extreme case such as intractable pain, if I had the choice, would I opt to have this condition?

I am not sure because I do not know how it would shape my personality and assumptions. And if it happened at birth, I might have become insensitive not just to my own pain, but that of others. Poof! That would have derailed me from a chaplaincy career faster than saying “Clinical Pastoral Education.” If you could have congenital insensitivity to pain starting now, how do you think it would  influence your outlook?  What do you think it would be like?

Book Review of GRATITUDE by Dr. Oliver Sacks


Reading  Dr. Sacks’ farewell book with its mournful black cover was like going through a typical day on the job as a hospice chaplain. Just like my patients, this famous author, well-known for his medical narratives such as The Man Who Mistook His Wife For A Hat: And Other Clinical Tales lists his regrets, his triumphs, his hopes, and his efforts to make sense of the life that he had led. In a word, this book is about how he dealt with his approaching end. Many of us can relate to his regrets, which included wasting time, being shy, and not traveling more. He also hoped to love and work as long as possible; again, much as the average person might yearn for in this circumstance. He also mentioned his regret at not having learned a second language.

Finding out what he had to say about his own medical narrative may interest those who almost never hear about or think about what it means to review one’s life as death nears, but for me I initially found that very predictable. Nevertheless, because he expresses it so eloquently,  even as a jaded clinician, I became more and more captivated by his life review. More than that, reading this little book became a ritual means for me to say goodbye to this spectacular and compassionate doctor. For example he explains, “[As I get older] I begin to feel not a shrinking but an enlargement of mental life and perspective…One has seen triumphs and tragedies, booms and busts…One is more conscience of transience, and perhaps, of beauty….One can take a long view and have a vivid, lived sense of history not possible at an earlier age.”

The book was engrossing in so many other respects as well. Like his other works, he offers a distinctive view that makes it a privilege to saunter among his words. Who else would link the number assigned to each element in the periodic table with one’s age? He opens his essay entitled “Gratitude” by saying, “Mercury is element number 80….on Tuesday I will be 80 myself.”  He goes on to say that  when he was eleven years old that instead of referring to his age, he explained, “I could say ‘I am sodium.’”  (Sodium is the eleventh element). Such an association alone should be enough to entice the scientifically minded and the intellectually curious to get this book.

It is poignant to read that his defense mechanism for dealing with loss was to “turn to the nonhuman.” It saddened me to learn that when he was sent away to a boarding school, “numbers became my friends.”And that “the elements and the periodic table became my companions.”

The last chapter is entitled “Sabbath.” Here he mentions his Orthodox upbringing, and his growing indifference to the practice of Judaism and finally his rupture with it when his mother utterly rejected him when she found out he was gay. Much later in life, he was introduced to positive experiences of the Sabbath and found he could enjoy its peace not only on the seventh day of each week, but on the “seventh” day of his life as well.
The act itself of perusing the book is a sort of Sabbath. It causes the reader to reflect, to pause, and to savor existence. “I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

This article was first printed in pallimed.org on March 20, 2017 and is reprinted here with their kind permission. the link is:
http://www.pallimed.org/2017/03/book-review-gratitude-by-dr-oliver-sacks.html

Arc

We tend to think literature has an artificial structure that separates it from how real-life interactions go. But what happens during my visits as a hospice chaplain can have just as much of a “narrative thread” as any short story, with an arc that goes from building a connection with each other (the background), to pent-up emotion let free (the climax), to a peaceful aftermath (the resolution).

Why just yesterday I saw the patient Isabel (all names are aliases), relatively young in her mid-sixties, and her mother Gloria, fervently devout Christians originally from Cuba. Gloria and I began with greeting each other and some small talk, all tinged with a resigned air as we entered the bedroom and she gestured to her daughter lying in bed. Isabel dreamily opened her eyes, wanting the respite of prayer and song. Isabel encouraged me to keep going: “my eyes are closed, but I still am listening.” I had started with some traditional prayers, and some simple hymns. I felt the calmness in the bedroom, decorated with so many religious pictures they practically could count as wallpaper. The daughter was riding on the warm current of the comforting religious words and music. The mother was letting herself feel their message of peace. I paused, and Gloria let a memory rise out of her: “Even when Isabel was a child, she wanted to go to church. Every day she went to church. Both of us went. Every single day. When we were in [she names a place in the U.S.].” As she remarked on that, I pondered how her faith contrasted with  the Cuban government’s discouragement of religious expression. This much was, so to speak, Chapter One.

After a moment of quiet, I said I would offer some  “more modern” prayers, a shift to Chapter Two as it were. I recited a “prayer for caregivers” and “a prayer for the sick.”  It was then that Gloria’s emotions bloomed and she let her tears be released, the most intense moment of the visit. I said God was receiving her sacred tears. Perhaps for her these were tears of acceptance of Isabel’s fate, because during  my previous visit, anger was the emotion that took center stage. As I said goodbye to them, the mother asked me to bring copies of those modern prayers next time. Isabel acknowledged my departure with an opened eye, closing the third and last chapter of this human interest story.