One Less Day

After a depressing weekend of contemplating the ongoing deterioration of friends and family on an out-of-town trip, I heard these lyrics on the radio while randomly looking for a pop song that I liked: “I’m not afraid of getting older/I’m one less day from dying young.” Crusty old hospice chaplain that I am, I was surprised to hear any pop lyrics at all that would give me a fresh perspective on fear of death. Not only that, the novel way of addressing our mortality in those lyrics actually lifted my mood. The writer of this song, Rob Thomas, should feel highly complimented by that, ha ha. I encourage my readers to hear “One Less Day (Dying Young)” at this You Tube link before continuing with the rest of this post, as viewing the lyrics alone robs them of their impact:   https://www.youtube.com/watch?v=gaSoq9FELF8

Perhaps this song is so effective because it directly and openly addresses our fears of aging and of death. He even refers to our dismay when people we know die young. I admire Thomas for outing some of our innermost fears about what remains a taboo subject, at least in popular culture. I have not encountered much popular music on mainstream radio that deals with aging and death head on, and certainly not without platitudes or other sugary coating. (I do, however think of “And When I Die” recorded by the group Peter, Paul and Mary in 1966.)

Beyond that, Thomas gets us to focus on all the time we have had thus far, which grows and grows, rather than the time ahead, which is becoming shorter and shorter. I myself derive comfort from considering how I have enriched and eased the lives of others with all that I have experienced and learned. This song encourages us to have gratitude for all the years that we have lived through thus far, rather than to fret about what has not yet happened. How does his song affect you? If it calms your fears, does it do that for the reasons I have advanced or for some other reason?

Being Clear about Ambiguous Grief

There’s plenty of uncertainty as we make our way through our lives, but we figure death is about the most certain thing there is. This nice neat separation gets blown to smithereens for those stuck in griefland limbo. Sure enough, there is a professional term for this: ambiguous grief. No, not “ambivalent,” though there is that kind too. But at the moment I am referring to “ambiguous” grief. How can that be, you may ask. Isn’t “dead” or “alive” about as obvious as it gets? How could the sheriff’s sign for the capture of a famed criminal say, “wanted, dead or alive or in between”?

Alas, even this totally dead or totally alive distinction cannot hold up. Suppose an individual has been missing for some time, but no  dead body is ever found to prove that all hope is lost, as in the case thus far of the Malaysia Airlines “mystery” flight number 370. Just as confounding is when a person is right in front of you but they no longer know who you are. Or they do, but they are so deteriorated that the relationship is essentially altered from what it had been. Sure, that person is not physically dead, but the connection they used to have with you sure is. Either way, whether talking about physically missing persons or emotionally missing ones, they are here in one way and not here in another, like those frisky elementary particles in quantum physics.

Even the “run-of-the-mill” type of grief has its shadings of ambiguity. In my last post, I alluded to the loss of my very close friend Jack. I knew he was going to die, and as the time drew near, I understood when it was imminent. Yes, when he was alive, he was “all there” and could talk like he always had almost until the last several weeks, but from diagnosis 5 years ago until the end, we were no longer in the same league. His life was most likely to be foreshortened; mine most likely would continue on to old age, which so far is still true 5 years later. Each year his domain grew smaller and smaller, while in certain ways mine extended more and more. In essence, I grieved from start to finish, from diagnosis to death, that we were no longer in sync. I grieved the uncertainty writ large that he had to face compared with the “small print” uncertainties, I the “spared” had dealt with regarding my own longevity.

Like those mischievous quantum particles that won’t behave and settle down, grief does not bunch up within one segment of time, but rather spreads out in varying intensity over an indeterminate number of months and years, backwards and forwards.

 

 

Death Cafes: Home of the Death Deniers?

Am I avoiding dealing with death by writing the kind of posts I do on this blog? Am I merely playing at talking about it because I often find a humorous angle on this topic? Some people may think so, because that is how they reacted to a newspaper article online that explained another avenue to death awareness, the Death Café movement. Death Cafes are meetings over coffee and cake that take place all over the world in a safe agenda-free environment, where people can talk about such concerns as how they want to be remembered, what their experiences with the death of loved ones was like and how to appreciate life more.

Many comments about the cafes were quite receptive or just plain curious. But the ones that were not seemed to arise out of some intense and persistent subterranean flow of emotions. The negative commenters roared that participants in Death Cafes were pretentious and were the biggest death deniers of all. On the face of it, that seems like saying that instead of a serious discussion, those attending a Death Café or the similar Death Over Dinner get-togethers are seeking entertainment, much as what one may experience at a séance or by reading a novel with a title like “Tall Tales from the Dead.”  That sentiment would be easy to rebut as well as to make fun of simply by carefully reading the article they were responding to. Far more instructive, however, is to tap into the subterranean currents crashing here and dashing over there.

Perhaps some of the derisive comments arise from hostility toward the “leisure class” who have the luxury of spending time to talk about abstractions like what they want on their epitaph, and who wish to impress themselves and others with how forward-thinking they are. Possibly in a similar vein, what’s afoot for some readers is resentment from having experienced years of care giving and the agony of a loved one’s slow deterioration and relentless descent into death. Hearing “Have some dessert and let’s chat about death,” must clash with that experience like viewing the movie Mash upon the heels of taking in The Killing Fields.  Or what this could be about is their own terror of taking up this subject, and thus they may be projecting their own death denial onto the very people who, however timidly and tentatively, are taking this subject on.

And to be honest with myself, what might the kernel of truth be in their dismissiveness? Do I distance myself from the downside of death by recalling charming anecdotes and writing with a humorous touch? I like to think that is not the whole story, though it may be a protective layer that makes approaching it ultimately possible, like the way a scuba diver’s mask allows her to see what lies ahead in the otherwise dusky waters. I like to think Death Cafes and my blog posts and all the other exposure to this topic will take us nearer and nearer to the searing enhancement of the living moment that looking death square in the face entails.

Related article: https://offbeatcompassion.wordpress.com/2013/07/31/death-cafe-not-exactly-a-last-supper/

A Contest between Prejudice and the Angel of Death

My husband Steve will do just about anything to obtain a hard copy of the Tuesday science section of the New York Times. If we are at the airport and the Times is sold out, he will search newspapers abandoned in the terminal’s seating areas or left behind in the plane. Now that’s devotion authors would maybe not kill for but do at least one hundred pushups for. Today I am glad to have my copy in hand, because an article about the racism that doctors face reminded me of a related issue I have confronted in hospice care. The main point of the article was that doctors tend to focus on how to avoid being racist, but not enough on how to handle the reverse, when it is the patient who is prejudiced against the doctor.

I may never know when a patient is prejudiced against my gender, race or religion, but I have faced patients who have confessed to me their prejudice about someone else’s race or other characteristic. Unfortunately, this most often has to do with race, but sometimes I get comments about religious groups, gays, the wealthy, and even party affiliation and geographic location. I feel very ill-at-ease during such conversations, but if the patient is unwittingly referring to me, I can be amused by the irony. Oh my, a liberal right under their nose under cover!

Ordinarily, if people disparage minority groups, I speak my mind if I feel physically and emotionally safe doing so. But with hospice patients I have to balance accepting them with all their moral failings versus considering what harm they are doing to myself as well as others they still affect, such as a home health aide of color. Be that as it may, in the face of the demise facing them and the current trials of the disease, those concerns drown out anything I have to say about that anyway. This is no cop out on my part; the times I have tried to voice disagreement I might as well have been speaking an unbreakable code.

I remember when a patient herself, Miriam, expressed her prejudice but at the same time consciously struggled with it. She was an Orthodox Jew, thus she did not recognize the ordination of female rabbis as legitimate. Since I knew beforehand that she was Jewish, I identified myself as a Jewish chaplain as I approached her bed for the first time. At first she was not sure she would or should talk with me, but her need to talk about her beliefs and her final days to a willing listener got the conversation rolling. With nary an Orthodox rabbi in sight, she settled for what she could get. As if in an aside to God she looked at me doubtfully and said, “I guess at this stage in the game it’s alright to have a woman rabbi visit. I’ll give it a try.” While hers was not the most enthusiastic reception to my identity, when it comes to a hospice patient, I will go more than halfway (about 2/3rds of the way give or take). With this help from the Angel of Death to clear a passage for Miriam and I to connect in an authentic way, she proceeded to lighten the burdens on her soul.

Words at the Starting Gate

When I talk with a person about his own death, especially when it is my own father, I feel like a race car driver having to make split-second decisions en route to the finish line.  Before letting my answer race out of my mouth,  I have to take in exactly what a person is saying and how they are bringing this subject up.  With my few seconds to answer, I have to consider how deeply they want to pursue the subject, why they are bringing it up, and what words and intonation I should use so I will not be evasive or inauthentic. I do not want to run out of gas or careen into a wall.

This time it was in fact my own father, so my emotions  came into play too before my brain gave me the all-ready signal. And now, as I write about it, I am especially self-conscious about my choice of words knowing that he, one of my blog followers, may be reading this along with everyone else who has alighted on this post.(Never fear, I did get his permission.)

Earlier in the day, my 92-year-old dad and I had covered our usual subjects, such as what good books to read, how he maintains his good health working out at the gym and eating the right foods, and what new activities I have engaged in. As I hung up, I remembered he had said something about feeling “so-so” and I wondered vaguely why he said that.

As if in response to my picking up on that, he rang again and broached the subject very cautiously by saying, “I think a lot about my age these days, but I don’t know if I should discuss this with my own daughter, especially because you are a chaplain.” I thought how ironic. It’s not like he was exploiting my expertise. But that was what he thought, because he went on, “You know, I don’t want to be like a person at a party who meets a doctor and then asks him about this or that pain you have.”

“Gosh no, not at all Dad.” Funny (but understandable) how the people we most should be sharing our thoughts about death with are the ones we most hesitate to do so with. It is one thing to attend a Death Cafe or peek at the dark humor Tweets of funeral directors, quite another to deal with the emotionally-laden prospect of a loved one’s death, whether imminent or remote. I felt like adding, “if not with your children, with who then?” Instead, I waited, which gave me time to think about what he had said about death in the past, such as that he is not afraid of it.

He continued, “I wonder when it is going to hit me. I wonder how it will happen.” I think to myself, I sometimes wonder the same thing. I also wonder whether I will die before or after my husband, whether before or after my brother.

“What can I do about it? Should I just not think about it?” Dad asked. Just to see if he had changed his view,I asked him if he was afraid. “I’m not afraid. It’s just like going to sleep, only for a really long time, that’s all. But I like being here and want to stay.”

At first I thought, what can I say to his question? It’s such an unanswerable one. And although what I said may not seem novel to most if not all of my readers, the fact that it was between a father and daughter, and that we were in a genuine moment, brought our cars in tandem: “Live in the moment, Dad.” He said that was a good answer and a great way to conclude that phone call. I celebrate how he and I were living completely in the moment during that conversation. Dad, may there be many more such moments for you before you cruise past the ultimate finish line.

“Death Cafe”–Not Exactly a Last Supper

Before I knew what a “death cafe” referred to, I pictured a collection of skulls clacking away as they helped themselves to a buffet, with soft foods and liquids being the most favored by far. “Death cafe?” How could food and death be juxtapositioned? One of the leading graphics in an article that  unveiled the meaning of this phrase showed elegant blue and white dishware obediently standing in a holder. A skull took up the center of each plate, hogging all the blue, leaving the white to fill in the periphery. Written on the rim was “Bone appetit.” See that? I’m not the only one who thinks like I do.

“Death cafes” are part of a movement to break cultural taboos against openly discussing such topics as how we want to be remembered, how to bring up the subject of dying with loved ones and how we want our funerals to be conducted. The food part, making this subject a bit easier to swallow, usually consists of beverages and snacks.The very first death cafes began in 2004 and really took off in 2011. The organizers say that by now approximately one thousand people have attended them in countries such as England, Australia, the United States, and Italy.

My husband Steve and I, both of us curiosity seekers, went to a death cafe in someone’s home  the middle of this month. We helped ourselves to some snacks–the best one was guava paste and cheese spread on crackers–and waited our turn to answer the question of why we  were there. Many people said they were open to discussing it because they had lost a loved one at a tender age, or they themselves were young when someone very close to them had died. My answer was that I wanted to see what people were saying about this topic and that I thought I might get ideas for my blog posts. (See?)

We then had to complete the phrase, “Death is……” Naturally I said, “Death is at the edge.” I say naturally because my book title is “Encountering the Edge: What People Told Me Before They Died” (Pen-L Publishing) Later when we broke into smaller groups, I said that when I contemplate this edge, it throws life, which is on the other side of that edge, into sharper relief.

I figured that I would have to forgo retrieving any humorous gems from this particular event, but luckily someone said, “Oh, I thought this event was called a “Death Cave.” “Death Cave?” Oh, is that where thoughts on death end up after we chew the fat? When Steve and I laughed about that on the way home, he said “that sounds like the Flintstones were going to host the event.” It’s about time. I never have ever heard Fred and Wilma  address the issue, have you?

For related article, see https://offbeatcompassion.wordpress.com/2013/12/11/death-cafes-home-of-the-death-deniers/

A Choir Rehearsal That Grew Into Two

Songs like ‘I will Not Leave You Comfortless” by Everett Titcomb and  “Bamboo” by Peter, Paul and Mary definitely left me comforted. I was a guest at a rehearsal like no other. The Threshold Choir, a national group with various local chapters of volunteers, sings to the sick and the dying. I often have sung to patients myself, and so I was eager to learn more about this choir with its exceptional name. (You can go to Thresholdchoir.org to hear soothing samples of the music and see their rehearsal locations.) “Threshold” to me implies a fuzzy boundary between life and death, between sickness and health, a boundary so uncertain and shifting that it creates a separate space. A middle ground. Music is one of the things that can dwell in this space, making the distinction between life and death less stark, less urgent even.

Little did I know that I would be experiencing not just one but two rehearsals that evening. After several songs, the leader placed a lightweight recliner in the middle of the circle we had formed to practice. It looked something like a hammock frozen at some moment in time, formed of a fine mesh of metal painted white. Anyone who wanted to volunteer to be sung to could lie down in it for a song or two, as long as they agreed to close their eyes. Since I traveled very far for this and figured I might not have another opportunity, a philosophy I have even when not traveling far, I volunteered. Besides, I was tired from the long hot trip and and rather keyed up from meeting a whole new group of people.

The recliner looked inviting. Fancy that, I was going to be sung to. Their music spread all over the inside of the circle and I felt it soak into me. But then I was startled as I realized this was a rehearsal for what I might experience if this choir were singing to me when I lay dying. After drinking in the mellow tones, I felt soothed yet afraid. I knew why they were there, and it was not just for aesthetic pleasure. I drifted in this fluid space as if the recliner had become more pliant, more giving. I was in the moment, and then a regret about my life surfaced: I had not lived in the moment often enough. I often had wounded the moment with distractions and anxieties. Those moments were half-lived at best. I then drifted to the mystery of what lay ahead and to the times when I dwelt alongside others in their in-between spaces. I filled those spaces with finely-tuned listening, with  spirited teaching, with touch, with steady soprano song.

Related article: https://offbeatcompassion.wordpress.com/2013/11/21/hurry-up-time-is-of-the-essence-must-reads-for-the-dying/ (I talk about “must-listen-to” music as well.)

Announcement: Chapter Two of the book, Encountering the Edge, consists of stories about my singing to patients as well as the effects of other music. This link will take you to my author page at the publisher’s site. The link includes a free excerpt: http://pen-l.com/EncounteringTheEdge.html

False Pretenses

Ironically, one of my comments on last week’s post,”An Uncompleted Story (Not This One)” dated July 10, stated that the post itself was incomplete too. Certainly any story can potentially go on further, but I take the comment as high praise meaning he couldn’t wait to read more about Jenny.

One of the loose ends about Jenny was that she had been at best a borderline case for hospice care for quite awhile. Such people can be put on hospice because hospices want to have as many patients as possible. Ultimately she admitted to me that she just wanted to be on the program in order to get some free hours of help with bathing and dressing by the home health aide. I did not know this for many months. In the meantime I was puzzled that visit after visit, I did not see signs of decline such as loss of appetite or changes in her ability to move around in bed. At one point I even showed her how to do some yoga designed for the bed-bound. (By the way there are chair-bound yoga moves too.)

Once Jenny finally told me the truth about getting put on hospice prematurely, I felt defrauded. She was seeing me under false pretenses. A chaplain is there not just to provide companionship, but to provide a safe place for patients and families to express their concerns as they cope with the impending crisis of death. I felt like a firefighter who had put on all her heavy equipment and driven over with alarms clanging for miles around only to find there was no fire. Once again, loose ends remain in this post. Perhaps this will be true for all my posts, given the nature of this topic. That, too, is ironic, as we think of death as final, as the ultimate closure.  _Karen B. Kaplan

An Uncompleted Story (Not This One)

Jenny [I never use real names] was  eager to see me. This was her infrequent chance to dispel the boredom which she sugar-coated with a TV that beamed at her with the superficiality of a smiley face. Now with me there, she chit-chatted as long as she could to prolong my stay. Talking-time was a rationed goodie, because her daughter, son-in-law and grandson were seldom in her bedroom. It was quite a production to help her out of bed, being heavy and largely immobile, so she could not go in search of interaction with them at will, much less seek it outside the house. Whenever I visited her, I took in the sounds and smells of young lives coming from the rest of the house while we sat in the quiet: her daughter clanging a frying pan down on the stove and squeaking open the oven; grandson-friendly smells like fried chicken carousing all about the house, and the explosive noises of a video game alternating with the grandson’s yips of satisfaction upon beating the odds.

The patient and I had been visiting each other for many months, and when she ran out of her own stories to tell me, we figured out that she would love to hear me read detective stories aloud to her, because she found it too hard to read print. We became our very own mini book-discussion group. I would read a few paragraphs to her, then pause, and she would give her opinion of the author, or guess what might happen next. I might offer one theory of who the murderer was, and she might counter with a differing theory. Not only that, she would defend her position. And as at most any discussion group, we would meander off-topic, from complaints about how seldom she had visitors, to a confession that she really shouldn’t be on hospice because the family signed on just to get more free hours for a home health aide to help bathe and dress her. (More on this sort of thing another time, otherwise I myself will be off-topic, one of a writer’s Deadly Sins)

One mystery novel I read from not only had an intricate plot, but also was a parody of mystery novels. The detective overlooked obvious clues for example, while his wife and others gave him advice and picked up on all sorts of clues, both obvious and subtle. To be honest, I have wracked my brain for the name of the author and the book, which had something to do with blackmailing. Maybe one of you will know. At any rate, Jenny always wanted to know what would happen next, and so did I, as I did not peek ahead. But neither of us ever got to the end of the story. One day, before our next scheduled appointment, she had reached her own denouement. Besides missing her, it always has bothered me that she died before she could hear the much-anticipated resolution of the plot. I  had senselessly thought at the time, “How could she die before we finished the book?” Like the uncompleted detective story, death leaves trails of loose ends as well as roads that veer towards untidy beginnings. -Karen B. Kaplan

What is offbeat compassion?

When I told friends, family and Twitter followers I would be starting a blog, they wondered if my anecdotes about people in Act 3 Scene 3 of their lives would be comforting or inspiring. They wondered  (and either hoped or feared) whether I, a hospice chaplain, had a religious agenda.  Hospice after all is a heavy-duty subject. Chaplains after all are, well, chaplains. Despite this, I have foregone any such goal. There are plenty of other books and blogs that already perform that service. Rather, my purpose in all of my writing is to bring readers  close-at-hand to places they are ambivalent about approaching, yet respect their need for space. Rather than perform the distasteful task of selling you a message, I feel my task is to let you see for yourself what hospice patients think about, value, believe, and avoid.

My attitude towards the hospice patients and their families is similar. I am not there to promote anything, though my presence may be of comfort. As a quiet nonjudgmental presence, they have full leeway as to what they want out of my visits, whether it be a listening ear, song, prayer, touch, casual chatter, or even simply just sitting silently with them. So one of my definitions of “offbeat compassion” is making room for persons who call upon us for help and letting them freely sort out for themselves how we can be there for them.

In the coming months, I will blog about anecdotes about the dying and with grievers, or  tell you about my experiences with such groups as a threshold choir (they sing to the dying), my responses to others writing about similar topics to mine, give book reviews, and provide excerpts from my hospice memoir. As this evolves, I look forward to amplifying comments you make and answering questions you may have. I plan to ask you challenging questions too. Who knows, I may give a pop quiz.

Since this is my maiden post, above all I want to thank all of you for venturing with me into this sometimes soothing, sometimes strange, sometimes curious, and sometimes funny ride.