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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Her Reality Star

Pulled over here and pulled back way over there: This is the reality of grief. Newark poet Ms. Lillian Washington captures this sensation in her prose poem, “Her Reality Star.” Night is beguiling, but brings no release. Finally, the woman finds a hint to a way out from her despair from a source that is true to her life path.

Hope was no longer alive.

A spring eternal never sprung.

Her smile, like that in a child’s eyes, was gone.

The hum of the night’s forces as she walked the pavement

Began to fade into the distance.

No longer did she believe that the magic of that day’s night

Would bring her closer to freedom from the pain of her loss.

Daybreak would come soon and the pain of that day

As the pain of yesterday would haunt her again and again.

“Why?” she cried out as she stared into the midnight sky filled with streaking stars.

The deep dark blueness cradled the stillness of the other stars that

Stared back at her tear-filled eyes.

Soon silence came upon her. No longer crying, she stood up and a peaceful look now covering her face, she rose up and declared, “No.” No longer would she believe in magic. She began to realize she should believe in the power of prayer and she would find her way back to the happiness she once knew. With her new direction found, she did not have to believe in magic anymore.

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Author’s biography: In her teen years Lillian Washington performed with soul singer song writer Jackie Wilson at the Branford Theater in Newark, NJ with a female singing group called the Vandettes. Later as a member of the Theater of Universal Images she performed various plays at Symphony Hall and Essex County College in Newark. As a part of a comedy duo she did stand-up comedy at Catch a Rising Star in NYC.  Ms. Washington’s current goal is to become a published writer of poetry and children’s stories. She is a member of my writers’ group, The Angry Bean Writers.

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!

Can I Take Your Spiritual/Emotional Temperature Please?

When you were in distress and went to a social worker, therapist, chaplain, your favorite clergy person, or friend and they said, “I hope I have helped you,” could you ever have uttered in the thumbs-down case, “Um not really”?  Unlike a nurse seeing vital signs returning to normal, chaplains and all the rest cannot be sure if the “spiritual/emotional” vital signs have improved by virtue of what we said  and how and when we said it, or through what we chose not to say at all. And was our visit too long, or not long enough? So in our frustration we are tempted to ask for an evaluation. We’d like feedback please. And maybe a pat on the back.

Think of it this way. If you were the client and someone asks if they have helped you, that expresses uncertainty on their part, as well as a desire to shut down the conversation. It is like saying, “I sure hope I helped, but if I haven’t, I am not sure how else I can go about healing you, and so I hope you don’t ask for more help.” A similar problem arises if the health professional or friend says, too early in the conversation, so-and-so might be of further help to you; here’s their number.” Both of these reactions are a way of saying, “I cannot listen to you as long as you would like, possibly because your topic makes me too anxious, or I feel too inadequate or incompetent to handle it.”

Okay. So we try our mighty best to repress such anxious noises. But this still leaves us with the puzzle of how well we did. (I’d like an “A” like anyone else.) When I am really lucky, the client will actually say how much better they feel, or look more relaxed, or ask me how soon I can visit again, or ask me to stay longer. In rare cases, they write me a letter of thanks afterward—super rare in hospice. And when I make mistakes, some clients quite readily make it clear that they want the visit to end, or would be more comfortable with someone else. Some have even become angry. I think to some extent or in some cases we will never really know if our visit benefited the client and will have to trust that if we intently and calmly listened, that alone did some good in the overwhelming majority of cases, because no matter what, everyone wants to feel cared about.

Full disclosure: While I was in the deepest throes of my own grief process, I had to go through several people before I could find those who would hear my story. The ones who did not make the cut said the things I noted above (They got a “C”) or made worse remarks than those (They got a “D” on a generous day). Maybe  being a chaplain myself intimidated some folks. I remember being nervous early in my career when I found out a client was a nun, pondering what I had to offer. Wasn’t I bringing ice cubes to the Arctic? In another case the client was a retired hospice nurse. Once again, the answer is simply to listen with full attention.This is what we all yearn for, no matter what our credentials are or those of the client. Just as the top three considerations for real estate are “location, location, location,” the top three for people in spiritual and emotional distress are, for the one asked to help: be quiet and “listen, listen, listen.”

Singled Out Versus Blending In

There’s an old joke in my religion that underscores our almost impish impulse to deviate no matter what: One pious Jew was stranded on a desert island and built two synagogues. When rescued, the crew members asked, “There was only you and your limited resources, so why two places to worship?” The Jew answered, “One was for me to pray in. The other one I wouldn’t be caught dead in.” Hmm, maybe the “other congregation” had a different way of handling the prayer for mourners (called the “Kaddish” in Hebrew and recited towards the end of each service). I have been reciting it for my father who died last December, and the tradition is to recite it for a deceased parent for about a year. In some synagogues only the mourners rise to recite it, while in others everyone stands and says it to support the mourners or to say it for those who passed but have no survivors to say it for them.

I have said this prayer in both kinds of congregations, and I have mixed feelings about each custom. On the one hand, if a few other people and I rise to say it, I feel acknowledged that yes, I am stepping through the peculiar passage of my first year without my father. Anyone present at that service who still does not know I had lost an immediate family member can later ask who I am mourning for and potentially become an additional source of support. On the other hand, I feel self-conscious drawing such attention to myself, as if a screaming scarlet “M” had sprouted on my forehead.

In the “other” synagogue, I feel more protected and less vulnerable as mourners and non-mourners alike participate in this ritual. But I feel that this dilutes and minimizes my feelings as they are “distributed” across the group. What do you non-mourners know about my feelings and those of the others grieving? The intention of course is fine, but it reduces the significance of the ritual for me. If everyone is carrying it out, then I am not doing anything special to mark my relationship with the deceased or to drive home yet again to myself the reality of the loss. I feel deprived of the power of this ritual.

If I and some other hapless survivors of another ship wreck had joined the Jew stranded on that desert isle, I would have instituted the following compromise: Everyone rises but only the mourners actually recite the prayer.

But wait, I hear an objection from the chair of the Board of Trustees: “That’s not the way to do it. Everyone recites but only the mourners rise.” Alas, we will need two synagogues after all.

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A prior version of this article was published September 6th, 2017 in the blog “Expired and Inspired”, in The Jewish Journal: http://jewishjournal.com/blogs/expiredandinspired/224040/two-jews-three-opinions-rabbi-karen-b-kaplan/ Permission was granted to place it here, with minor modifications.

What’s In A Preposition: A Grammar For Grieving

It’s bad enough to grieve for someone you truly miss and who was so affirming of who you are. And it’s plenty confusing, too, to ponder the mind-boggling fact that they are not here. One of my patients recently captured this fact by stating, “I just want my obituary to say ‘Lucy WAS…’ and that’s all.”  She sure captured the essence of the matter: the most basic difference between life and death is existing versus not.

But it feels far more perplexing if not downright contradictory to grieve for someone who was not exactly a model of goodness and caring. Perhaps they neglected you or far worse. You might say, “Who said anything about grieving for that sorry son of a gun? I don’t care and I’m not sad that he is dead. Good riddance.” But wait, we can’t get off the hook that easily. The definition of grief is “reaction to the loss.” No one said anything about that reaction having to be sadness or missing that person’s presence. Maybe you even danced on the grave. But react we must, whether it is relief that he is not there to act indifferently to your latest news, sorrow that he had not been a better parent, anger over how he had mistreated you…you get the idea.

Yet it seems odd to say under such circumstances, that “I am grieving for my mother.” I think part of successful grieving is portraying the process to oneself as honestly and accurately as possible. Otherwise you will hinder  the purpose of grieving in the first place, which is to allow all the feelings, great and small, peaceful and turbulent, joyful and gloomy, an open path for release. Somehow saying “grieving for” sounds like the tears are ready to roll at almost any provocation and that you miss them if not for how they were at the time of their passing, then at least for how they were in better days.

Methinks I have found a solution for us unconventional grievers. Let me know if the sentence below helps you to  express to yourself how you really feel about that louse. Does saying it this way give you permission to stop censoring those less socially acceptable emotions?

“I am grieving against my father.”

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.