Magical, Oh So Clinical

On the job, I feel like the person described in Supertramp’s 1979 hit called “Logical Song.”  The song describes a happy existence that is later in life replaced with an impersonal emotionless one. The difference on my job is that both halves of the excerpt quoted below are true simultaneously, every day. Part of me is the chaplain who with no agenda engages in dialogue with patients, reacting on the fly to whatever they wish to share. I am there sometimes facing the most intense emotions and sometimes I am there to savor life with them or just sit with whatever mundane moment is in progress. But then a separate part of me goes to my office to document the visits. Documenting involves a very strict set of rules and I have to write out a description of the visit in a detached tone. There are countless lists of things to put check marks by, and there are some words I must use no matter what the visit was like, for example, “A trusting relationship is being established.”

The first lines of the “Logical Song” symbolically correspond to the actual visits:

“When I was young, it seemed that life was so wonderful,
A miracle, oh it was beautiful, magical.
And all the birds in the trees, well they’d be singing so happily,
Joyfully, playfully watching me.”

Even in hospice, sometimes patients look back to “wonderful” and “beautiful” memories, and ponder the miracle of existence. They communicate this to me and I feel the poignancy of it and am in awe that they are letting me in on this ultra-personal dimension of their being.

The next lines correspond to the completely structured paperwork I must do:

“But then they sent me away to teach me how to be sensible,
Logical, responsible, practical.
And they showed me a world where I could be so dependable,
Clinical, intellectual, cynical.”

The song actually says “clinical!”  Yep, that is a part of who I am. When I forget to put in a certain detail or do not do it on time, my supervisor may say, “You are out of compliance.” Ouch! (She does like and appreciate me, though, it’s not that she doesn’t.)

On one level, this may seem to be too painful a conflict. I have seen budding chaplains who found they could not reconcile these disparate identities, and ended up leaving their jobs, or doing one part well and the other not well at all. On another level, I try to see the paperwork as two things: superficially, it can be a nice neutral break from the intense emotions and deep thoughts I must respond to: Good! I can do something mindless for a little while. Beyond that, I think of it as the tax I must pay for the privilege of being present with people who are giving of their most intimate selves, who are revealing to me their innermost beliefs as they risk getting nothing back in return.

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.

Curiosity Seekers: Spiritual Science Fiction

curiosityfront

If you were offbeat enough to  find my first book “oddly entertaining,” then you might enjoy Curiosity Seekers  all the more.  It is a gentle science fiction work about a retro couple in the near future who gets into and out of various predicaments. Now that’s a lot more fun than hospice, isn’t it? One of the main characters is Gomer Ackerman, who repairs and beautifies material books which are becoming more and more scarce. The other main character is his wife Muriel, who designs one-of-a-kind greeting cards each intended for only one recipient. Their financial planner Virginia Boyden is more conventional, but things go awry after she gets dementia and becomes one of the first people cured of the disease. The catch is, as she gets better and better, an unexpected side effect comes up. In another story  Gomer becomes a widower and deals with his wife’s death by buying a robot that looks and acts like her, even in intimate matters. Ahem! He then suffers immense remorse and comes up with one ridiculous plan after another to atone.  You will also meet the Ackermans’ great niece Beatriz, who finds creatures on a different solar system that have to be very sparing with their words in order to survive.

Here is an excerpt for the readers of this blog, when Virginia describes part of her recovery: “When I had dementia, it’s like all the words in the English language had flown away from me into space, all the way to another solar system in another part of the Milky Way you could say. Then I called to them  to all please come back home, and they did, at first a few at a time, and then bunches of them at a time, each batch making a perfect landing in its own proper dear little spot in my brain, like birds finding the nests of their young days.”

You may wonder why a chaplain has written science fiction. One of my reviewers explains:

“Kaplan’s sci-fi will appeal to readers who like their spaceships and androids served with a side of spiritual contemplation.” — Mystery writer Mindy Quigley, author of The Burnt Island Burial Ground

You can see more about these interrelated stories on amazon:  http://amzn.to/2mjXpR0

 

The Myth of Wanting To Let Go

Guest author Lizzy Miles explains in her article here and in Pallimed.org why telling a dying loved one they can “let go” might not be such a hot plan; it might even make things worse:

The idea that a dying person is waiting for permission from their loved ones permeates many articles about the final days of dying. There is some truth to the idea that some patients may linger because they worry about the ones they are leaving behind. However, this concern about the bereaved is only one of many possible reasons that patients do not die when we think they should.
Consider this. How do you know it is okay to go? Have you died before? Do you know what it feels like? No, you don’t–none of us do. Dying is scary stuff, even for patients who have a strong belief in the afterlife or heaven.

Several years ago I had a patient, “Betty,” who told me that she was not afraid to die because she had a vision of her deceased husband and he told her everything was going to be okay. Then one day I was called to the house because she was “dying.” The chaplain, an aide, a few family members and I stood around the bed. The chaplain began to play music and the patient yelled out, “NO” several times. The patient continued to be in distress until we stopped the music and everyone left the room. She calmed down immediately. In hindsight we realized we had put pressure on her to die before she was ready. She died a few days later in the early hours of the morning with her favorite aide by her bedside.

When my aunt was dying, we had the bedside moment with all the family members praying and then my cousin stopped and said she was going to run an errand. I thought she was having a tough time and had to step away from the situation. That wasn’t the case. She told me later that at the time we were praying, she heard her mom’s voice in her head, saying, “I don’t know what you’re all doing, but I’m not going anywhere right now.”

On more than one occasion I have had friends and family question why a patient hadn’t died when they had told them it was okay to let go. The first thing I do is normalize their feelings of uncertainty and the difficulty of not knowing when. Often in these situations I explain the phenomenon of timing. I tell family members that dying is like planning a dinner party. There are a lot of components that need to happen for someone to be ready to go. I tell them sometimes a patient waits for someone to arrive and sometimes a patient waits for someone to leave. I instruct the family to not worry too much about the right conditions because they are difficult to anticipate and rarely what we expect. I tell the families that it will all make sense ‘afterwards’.

I had one woman who was questioning me on the length of time it took for her husband to die and I gave her a short example of another situation in which the patient was waiting for his spouse’s sister to arrive. Oddly enough, that was exactly what happened again. These patients weren’t waiting to see someone for themselves, they were waiting for someone to arrive who would be a source of support for the ones left behind.

One of the more challenging aspects of bedside hospice work is for staff to leave their own expectations and ideals at the door. The best advice I was given as a new social worker was to remember the acronym “NATO” which means Not Attached to Outcome. While we can give suggestions to families and friends on how to talk to or be with their loved one, we have to remember to stay neutral if they do not follow our guidance.

There are times where we, as staff, express our concern about patient situations behind the scenes. Have you heard a coworker express concern or thought to yourself:

There are “too many” people in the room.
Why aren’t they talking to the patient?
Why would they talk about those topics in front of the patient?
How could they talk that way in front of the patient?
Why isn’t there anyone at the bedside?
Why won’t the caregiver tell the patient it is okay to “let go”?
Why won’t they leave the patient’s bedside, even if for just a minute?

Caregiver actions at the bedside can sometimes confound and unsettle us because of our own ideas of a “good death.” However it is not up to us to define. We may actually be the ones who have to “let go” of the idea that we know what’s best for our patients.

This article was posted by Lizzy Miles on January 20,2017 in Pallimed.org. and reprinted here with permission.For the original article plus comments, see  at http://www.pallimed.org/2017/01/the-dying-dont-need-your-permission-to.html

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Touch-Tone A Prayer

As I entered the modest room, about a dozen friends and family were awkwardly standing all around the patient with his hospital bed as the hypnotic centerpiece. Xavier (pseudonym) could no longer register their existence, and they in turn felt disconnected from each other. Xavier’s daughter had asked for a chaplain and the spontaneous prayer I offered melted away some of the tension. But when I was done no conversation with me ensued, so to conclude the visit graciously, I gave them one of my business cards and explained that the cellphone number listed is my personal one for them to call as needed.

During my time off the next day, the daughter called and asked if I could come pray again. Guess I supplied a high-quality prayer since she wanted seconds. She declared, “There’s only my husband and me this time with Xavier, so it’s more peaceful now and we can concentrate better.” After I told her I was not in the facility that day, I broached the idea of imparting a prayer over the phone. I worried a little that she would think that was a pale substitute, but the power of the word was to prevail. “I’ll put on my loudspeaker and we’ll listen,” she enthused. Thank goodness she requested Psalm 23, because that was about the only Psalm I had in instant reach. After I recited it, she hesitantly asked about sharing a prayer of her own, which of course I urged her to do as I listened. Her prayer was about feeling God’s strength and praying for Xavier’s peaceful passing. I then intuited that I should follow that by softly singing the spiritual, “This Little Light of Mine.”

The couple murmured their appreciation, and the most moving call of the month was at an end.

Double Exposure

This time it felt like the lowering of the coffin was taking place in a slow-motion film. When it finally bottomed, the descent seemed deeper than usual too. I have officiated at perhaps over one hundred funerals, so you would think I would know the norms. But this one was for my own father. Intellectually I knew the steepness must have been the same. And others present assured me the coffin was going down at the typical speed.  As the funeral went on I was in two places at once: as death professional and as mourner. Would this make my mourning easier or more complex, or both?  A few weeks ago, my husband Steve and I co-officiated for my 95-year-old father at this simple gathering that barely topped a minyan (prayer quorum of at least ten adults). I chose to chant the Prayer of Mercy, which came up in the service so soon I whispered to Steve, “I do this already?” It felt like we had skipped part of the service. Well good I thought. My professional role was not crowding out all the effects of grieving: an agonizingly slow lowering, a harrowing depth, and distorted time. As I chanted, I felt like I was fulfilling a once-in-a-lifetime sacred task . How many mourners have the opportunity to ritually sing of God’s  “sheltering presence” and “finding refuge in the shadow of the Eternal’s wings” as part of their send-off for a loved one?

During my initial mourning period at home,  mulling over the idea of returning to work soon after was nauseating at first. Being a hospice chaplain is not exactly a good distraction from funerals and grieving. But there is the comfort of colleagues, and we certainly have been more on the same page than colleagues of other professions could have been. Also I do not have to bear the stupid or insensitive remarks I have had to endure elsewhere, such as, “It’ll be easier for you. Old people are so hard to take care of anyway.” Yep. A distant relative  actually said that to me as the body was being shipped across state lines to its final destination. As for taking care of patients and their families, at first I told myself that other  people’s problems were a break from the constant rewind tapes of my own. Maybe I could not concentrate as well as usual, but it sufficed.  After the blur of the first day or so, I then pondered how my thoughts and feelings were running more parallel to those of the people I was serving than ever before. I felt more united with family, thinking, “I’ve just been through what you are going through. I’m with you. I can relate.”  So the upside of going back to work is that I have not had to pretend and put on a happy face. Most of all, I feel more deeply the sacred power of visiting the sick and accompanying the bereaved. I am honoring my father’s legacy by striving to do compassionate acts in the context of a now tighter bond between myself and those I serve.

 

This article was reprinted with slight modifications from the blog “Expired and Inspired” in The Jewish Journal, December 28, 2016. The link is http://www.jewishjournal.com/expiredandinspired/item/double_exposure