Lessons My Older Self Taught Me

Today I took my time machine back about fifteen years and 60 days ago so I could make my younger me a better chaplain right away. Why let her waste her time, and not benefit her clients at the same high (ahem!) level that I am employing right now? And I tacked on the extra days so we could luxuriate in some better weather; if one has a time machine, one should use it to best advantage. A transcript of our conversation follows:

Karen the Elder: “Karen, I’m here to do us a favor: I’m going to make your life easier, which means making my life easier. I figured by the benefit of my experience accumulated all these years, I’d clue you in.”

Karen the Younger: “That’s mighty nice of you. I’m all for diminishing the amount and degree of tough times ahead, as I’ve already had my share before now. And it’s good to see I will still look relatively pretty in my sixties. I’m burning with curiosity to hear what you’ve learned. You know me, curiosity is what drives me on in this job. And are you still highly curious?”

Karen the Elder: “Are you kidding? I even wrote a gentle science fiction book called Curiosity Seekers. I was gonna say, ‘check it out’ but it won’t be written until 2017.”

Karen the Younger: “What a tease! Now I’ll have to wait all those years.”

Karen the Elder: “And not only that. You will be getting a book published four years before that about hospice called Encountering the–”

Karen the Younger: “No way!”

Karen The Elder: “Well, that’s another story so to speak. I can’t stay long, because being in another time is a strain on the body. So I must go to my suggestions for how to be a better chaplain with the bonus of less stress at the same time:

First off don’t worry so much about drawing information out of a patient, as if you had a fishing line and had to reel in a heavy fish with all your might. You know about spirituality. You know about the mystics talking about receiving. And of course you know about mostly listening and being silent. So put those all together: You quietly sit with the patient, let the conversation meander in a natural way after you make a couple of open-ended remarks, and see what the patient releases for you to receive. As one of my mentors long ago said, “Each patient you see is the face of pastoral care.” So everything you are receiving is a gift arising of their comfort with you and their needs to share it and how special that is that you are there to receive it.

And so I think of receiving what the patient says as a spiritual act. In some cases the patient will sense it too and not only feel that you are honoring what they choose to say, but feel a summoning of God’s presence. I know there are requirements for the medical record, but I think whatever information arises out of the client’s need to impart it will ultimately result in what is truly spiritual care. It will be more to the point for what a chaplain should say in the clinical note as opposed to a social worker.

Karen, of course you already know about chaplains listening and being silent as much as possible. But the trick is not to feel anxious about it when both the client and you are silent, as if there was some contest as to who will break the silence first. Rather, be lost in thought as the patient may be, sojourn with their quiet and just listen for something that might burst through the surface for either of you. If not, close the visit by saying it was nice to spend a few quiet moments together.

Another thing: I used to think when a patient or family member expresses strong emotions I should be calm and soothing. That only goes so far. It’s better to broaden the tent of whatever emotion they are expressing to extend over you. If they are angry, join in being angry at whatever they are angry at; if joyful, then join in the celebration. Guilt though is another matter. You do not of course want to heighten this form of what I call ‘anger at the self.’ Acknowledge it as something they feel, but suggest in the future this may ease as they get a different perspective with the passage of time.”

Karen the Younger: “And what about—”

Karen the Elder: “I wish I could spend more time, but I am getting fatigued and must return to my present. But let me just add one more thing; Don’t be so intent on what you want to give a client. Find out what they want to give to you. They might want to reveal their pain, their sorrow, their regrets, their love, their beliefs, their hopes. Don’t forget what I said: maybe it will make the book Encountering The Edge a better book. Bye now! Oh, and you’ll be starting a blog called OffbeatCompassion… Bye!”

Karen the Younger: (teardrops fall)

Careful! Metaphor Ahead

Sure, the metaphor hounds are well-meaning when they try to soften the blow of a calamitous diagnosis. The two top contending  metaphors for facing disease are (1) doing battle with it, and (2) going on a journey. Yes, I get it, war imagery can be energizing and drive the patient and family to do diligent research and pursue any treatments that bear a reasonable promise. And yes, a journey might comfort some who think of joining others who are on the same trajectory, especially if the endpoint involves arriving home to a congenial God. But for some people, these particular images are as off putting as the bromides they have to endure from family, friends and medical professionals.

Think about the military imagery for a moment. Our bodies do have natural defenses, with our antibodies doing their best as the good little soldiers they are. Medicine acts as reinforcements to join the fight. But we ourselves do not have to employ our mental faculties in a certain fashion to add money to the war chest. The effort itself to do so can be draining, as we feign cheerfulness and optimism. And what if the war effort results in a long drawn out inconclusive struggle with the disease, like so many wars in our world like the conflict with Afghanistan? Or even worse, what if “our side” starts to lose or even face final defeat? Then the patient will feel they lost the battle, and God forbid think they did not try hard enough or that they failed their loved ones. You get the idea how this might be a risky metaphor. And even apart from that, wars are a negative phenomenon to dwell upon anyways.

Given the inherent negativity of war and the image of division within our bodies, it is tempting to think of a journey as oh such a sweet and nonviolent alternative. But journey to what? Even if the journey is to God, or if not so dramatic, a journey to physical or mental limitations, what if you do not want to undertake such a journey just yet?  (Excuse me, Sir, I’d like to get off at the next station and I want my money back.) In the image of a mandatory journey, there is no sense of control, and this can be scary.  I think too, it obscures the idea of our whole lives as being a journey, which we do play a part in shaping. We  have some control, making choices that shape the subsequent stages of the journey, creating as many pleasant or at least educational stopovers as possible. In contrast, the disease journey image may make the patient feel the disease is boss and that they have no say in what will happen.

For those readers who do relate to these images, that is terrific. My concern is when people foist these metaphors upon those who might feel distressed by them, or when the  timing is wrong. So what to do? Whether you are the one who is sick or you know someone who is, the picture is complex. Let us take the latter. I think when a health professional is searching for metaphors it should be more towards the end of the process of offering help rather than at the beginning. One has to know a lot about the person in question to ascertain what might fit, and that takes time. One has to know the sick one’s attitudes toward disease, how they’ve coped in the past, what in life has given them meaning, and what they most care about. If the patient takes a scientific approach and is agnostic at best, the journey metaphor might strike them as pure hocus-pocus. A pacifist might not appreciate the war metaphor, and so on.

Just like a bromide, the proffered metaphor can be the lazy and anxious way to attempt a quick salve (or salvation). Real help takes an investment in time (oh, that!) and attentive eliciting of concerns and attitudes and beliefs. Real help is making way for the sick person to create or co-create with you their own metaphors if any. If you are currently chronically sick, do you have your own image for making sense of it? Do you have your favorite “pet peeve” images?

Since I want to leave the reader with at least one example of another sort of metaphor aside from battles and journeys, I will offer my own. I am not now chronically sick much less facing the end, but I can imagine what might work for me: I find nature, when it is peaceful, a great source of solace, and I subscribe to the notion of God as a Presence. So I think for me, as a part of nature myself, that my metaphor of  choice will stem from that. Perhaps I will feel more and more blended into it and more at one with it and with the Presence that dwells there and dwells within me as well.

Book Review: Words At The Threshold: What We Say As We’re Nearing Death

With all of the years of chaplain experience that I have, rare is the book about dying that raises my awareness of how to do my job better. The author Lisa Smartt is a linguist and the essence of the whole book is that the talk of persons who are going to die relatively soon, from a few hours to a few weeks, reflects “consistent patterns that emerge in language at the end of life.” Her data consist of 1,500 English utterances gathered over a period of four years. Some of the patterns she found include paradoxical statements such as, “I understood everything everyone said, but not a word was spoken,” metaphors such as “Yellow bus…lots of angels are driving that bus,” or visions such as seeing ancestors or spiritual figures.

After I read Smartt’s numerous categories and examples, I started to notice this special pre-death talk more often while doing my own hospice work. I then found myself responding to this special way of talking in a much more tuned-in manner than before, letting myself explore what the person was trying to convey. Just the other day a gentleman who only leaves his room in a recliner to relax in the sunroom informed me, “I have to go to a meeting.” I asked, “What is the meeting about?” (Other staff might have tried to “reorient” him by saying there was no meeting he had to attend.) He said, the meeting “is about everything.” I echoed, “Everything?” and then reflected, “That’s going to be a really really long meeting.” Chuckling, he agreed with that. I thought to myself, he might have been referring to what professionals call “life review,” i.e. the kind of run-through of our life story that some people do during the period of time before the very end as well as at other key moments of their lives.

Another characteristic this book includes is intensified language, or what I would call heightened sensitivity. I will never forget the time a patient said to me, hours before dying, that the water I gave her “was the most delicious thing I have ever tasted.”

If you find these examples engaging or touching, you will find anecdote after anecdote in Words At The Threshold, some of which are very poignant. One is about a woman who kept referring to five boxes she had to organize. Her daughter thought maybe the boxes stood for her and her four siblings, and at that her mother got agitated and exclaimed, “I need to find a place for them!”  She did not calm down when her daughter mentioned where each one of them lived.  Finally when the daughter said to her mother she could keep them in her heart, she became calm and relieved. A lesson here for all of us who may in our personal or professional lives be with someone talking near the end, is to not be too literal and instead get at deeper things such as love and other values.

Besides sensitizing me how to better connect with patients when they engage in “threshold talk”, this book also teaches me to recognize it as an indicator that patients may be nearing the end. So many times, as families struggle with uncertainty, they ask me how long their loved one has. Not even nurses always get this right, and we do not want to increase anyone’s distress by guessing wrong. Especially way wrong. But at least threshold talk can be a guide, and I can let families know that not a whole lot of time may be left. Another benefit of this book is that it  shows us how to make the most of a loved one’s end-of-life talk, for example by keeping a journal of all of the utterances to look for patterns of meaning among them, and by thinking of conversing with them as if we were learning a new language in a new land.

My only caveat is that at times, Lisa Smartt thinks that threshold talk hints at an afterlife, partly because the language is like what people who have had near-death experiences use. She thinks of these people as having died and returned, and that the similar language they use is suggestive of consciousness after death. But one could reason the reverse: that since people use such language on other occasions that do not have to do with their actual final death, that this disproves anything about threshold talk pointing to the existence of an afterlife, as comforting and moving as that would be. The author is a poet as well as a linguist, and so I take her comments about consciousness after death in that spirit.

Closing In

When I first came aboard hospice care, one of the most common topics patients would reminisce about was World War II. Fortunately I had enough historical knowledge for them to feel I was on the same page. Now, about fifteen years since I first worked as a chaplain, their reminiscences are more often about the Vietnam War. Same goes for music. Patients are starting to talk about songs I grew up with!

On the one hand, it’s nice to have more of a shared background with my patients. I can chime in with my own memories if they refer to Nixon or to the Moody Blues.  On the other, I don’t want to have all that much in common with my patients if you know what I mean. It is a reminder that as a sixty-something, I am edging nearer and nearer to the same final curtain that has started its descent upon them. I am also having to care for patients more and more often who are my age or younger.

A gentleman I met at an open mike event last week was bursting to talk with me. I had just read a portion from my hospice career book about a patient who liked to refer to me as “doll” and who knew the game for him was just about over. This gentleman who I will call Sebastian was in his seventies and was grappling with some recent deaths in his family. The memorable piece of his story was that he felt “selfish” for pondering his own mortality. In the same breath he told me that given his age, he fears death more than ever. In other words he felt guilty (See my last post on this most entrenched of emotions stemming from loss. That is, forget about trying to talk someone out of it). When I asked Sebastian what was selfish about thinking about his own death, he said, “I should be thinking of the person who died, and I should be helping my uncle.” As I think about this now, his dilemma was that his fears were overriding his efforts to honor the deceased and console his relatives. And when I told him it was normal to think about one’s own end in these circumstances, he said, “It may be normal, but it is still selfish.”  I nodded my agreement, because as I explained in my last post, it is useless to try to talk anyone out of their guilt. All I can do is ask probing questions and make comments that can increase self-awareness and self-discovery. Perhaps feeling selfish was his method for distracting himself from his fears.  Ah, the complexities of the human psyche! This reminds me we should never be so quick to think we have figured someone out and therefore know what they need or should do.

As for me, I do not feel selfish about focusing on my own demise as I serve my clients. In fact, it gives me more in common with them! But the downside as I hinted in the beginning is the fear of, among other things, a premature end. I am glad in my case that fear has won over guilt because fear can be tamped down as I learn from my patients, while relief from guilt is much harder to come by.

****************************

To see my post about a client who did diminish my fears, see this entry from February 12th, 2018:  https://offbeatcompassion.wordpress.com/2018/02/12/how-to-have-the-final-farewell-without-fear/

Guilt: The Most Tenacious Emotion

Mr. Guilt gets it wrong so much of the time, skipping over people who should feel its punishing pinch, and injecting its emotional pain into compassionate people who should be fully at peace with what they are doing or have done. The public pictures chaplains hearing confessions of sin that people feel guilty about. But  patients and families under my care rarely have wrongdoing to reveal to me, such as skimping on care for a loved one in order to ultimately have more money for themselves, or confessing to assault, harassment or any other kind of crime from their past. Much more common is the guilt for things they should not feel any guilt about at all, and if anything, should be at peace with or even proud of.

I am thinking now of a patient Matilde, who has been so religious all of her life that “she almost became a nun,” a child of hers said. She is confined to bed. When I see her, she speaks Portuguese and she settles for my Spanish as a linguistic compromise.  At each visit, she laments that she cannot get out of bed and go to Mass. I assure her that God is everywhere, including her room, and usually this does not console her. But one time I said it again and went into more detail, and to my consternation, she started to cry even more. “What did I do now?” I  (guiltily) wondered to myself. Fortunately her sister was visiting and she could translate the amount of Portuguese the patient was saying that I did not understand—which I assure you was a substantial chunk. She translated, “I am crying from happiness, not distress, because you brought God to me.”

As moving as that was, assuaging guilt is the exception. Trying to do so might even let Mr. Guilt become even more entrenched. I have to remind myself that instead of talking a person out of guilt to let them talk about their guilt. This is really no different from how the helping professions should operate regarding any kinds of changes for the better they yearn for their clients to make.  We have to ask questions that will unearth hidden angles. We have to refrain from giving them the distraction of resisting our suggestions of “Don’t feel guilty” instead of exploring what ghosts past and present are fueling it. Clients have to find the end of their guilt trips on their own, and all we can do is illuminate the obscure segments of the journey.

Sometimes I am lucky enough to see Mr. Guilt being let out at his last stop when a client talks with me about their guilt during a series of conversations. There was the case of a patient’s son, who I will call Samuel. His mother, who will get the name Jackie, was a patient of mine for around a year. I saw that when he visited her, she would needle him about this or that and make sarcastic jabs at whatever came to mind. When I spoke with Samuel about this after his visits, over time he built up a story of family relationships with plenty of twists and turns for guilt to ride along in. I was surprised first of all when he said his mother favored him over his other siblings, given all her hobbling negativity towards him. (If that is favoriting, I wonder what his siblings dealt with; i.e. “With friends like that, who needs enemies,” as the saying goes.) Over time Samuel talked about his sources of guilt, amply supplied not just from within, but from his siblings. The gist was that they accused him of not giving his mother enough care, the right care, enough money, enough visits, and so on. No praise and certainly no encouragement that I supplied about his compassion, his constant visits from far away, no lamentations over the hostile texts and emails from the sibs which he had showed me, served to derail his guilt. Of course guilt stalks a favorite child, so I knew this was part of the story, which we discussed. I suspect even Joseph felt ill at ease as much as he reveled in his coat of many colors. Still, covering that did not make any headway either.

I soon refrained from praising him and discussing favoritism and over time uncovered a clue that at least took guilt out of the driver’s seat: “When you feel guilty, this lets your sisters do their job for them. They don’t have to feel guilty about anything they do; they just lay it all on you and instead of them beating you up, you oblige and do all the work of beating yourself up for them.” For the first time regarding his guilt, Samuel said he felt “lighter.”  A day later he emailed me that he was sleeping better. Ah, Mr. Guilt, I got you that time!!

In Praise Of Euphemisms

The way some people pooh-pooh euphemisms you would think they were a miniature form of fake news. When I was a chaplain intern I was admonished, “Don’t say ‘pass away’ or ‘ she is in a better place.’ Tell it like it is and say the person died or is dying.” I do get the point about being honest and direct about a painful and scary subject, and that such directness is a corrective to all the death avoidance in our culture. Euphemisms can even do great harm by breeding misunderstanding. I have cautioned families with small children that if they say “Grandpa went to sleep” the kids might be afraid to go asleep and suffer the same fate, or they might keep hoping Gramps will wake up. Clear language also may help the mourners grasp more quickly that their loved one is going or gone and that it is time to go forward on their grief journey.

But sometimes euphemisms may be exactly what the chaplain ordered. The problem with directness is that it can be, well, too direct. Is it always necessary to drop the unvarnished truth on someone all at one go? Maybe truth in small doses is more manageable. Sugar-coating has its place if the alternative is not to take the dose at all. After all, what family member can take in all at once that death is imminent? So many times I talk with family on the phone when their loved one is on hospice who ask me if the patient talked with me during my visit. This is after I see the patient  just prior to the phone call and observe that he is completely unresponsive and glassy-eyed, which means, to coin a new euphemism, he is about to become a part of world history. Rather than necessarily say, “I’m so sorry to say this, but it seems that your husband is about to die and probably has only  a day or two left,” I might say, “I think he is not speaking now because he is turning inward and preparing for the end.”  That is pretty clear without mercilessly rubbing in the details. And even with that, the family might go on to chatter about the patient feeling better tomorrow.

Sometimes I use euphemism as an entrée into general discussions on death. After all, the title of my book, which is about true stories my hospice patients told me, is a euphemism! (The title is Encountering The Edge.) And if you are a health professional reading this blog post, you may well know that humorous euphemisms are a part of self-care. So very many times I have joked with my own husband, a baseball lover that so-and-so is “in the bottom of the ninth.”

Next time you see that someone is in Act Three, Scene Three, consider euphemism as one tool among many for helping others as well as yourself find a byway when the main road is impassable into that most formidable of subjects, death and dying.

Fast Backward

Juliet, the wife of a patient of mine, used to work at the residence where I now serve as a chaplain before it became a hospice. “It was a place for elegant ladies,” she said, fondly reminiscing about the luxurious setting she experienced there some sixty years ago. “I would prepare their lunches and set the plates in front of them by the hand -carved napkin holders on the linen tablecloths and run other errands. And they wore gloves as they ate and most of them wore tiny white caps on their heads. They were so well-to-do. And another thing, if they wanted to leave the premises, they had to sign out with the receptionist to go out to lunch (never mind dinner) and then sign back in when they returned.” As she relived that time, I wondered where all this quaint standard of behavior really happened. In Mayberry perhaps?

The residence is actually in Elizabeth, New Jersey and still has the features of a mansion, such as chandeliers, a stairway carpeted with a floral design, sun rooms overlooking a gushing fountain, a miniature walkway, and gardens that meet the standards of squirrels and Siamese cats. One of my other patients there, who had been homeless, felt he too had fallen into the lap of luxury, as if sensing its former classiness. “This is like a hotel,” the former motorcycle repairman told me. “I get food brought over to me anytime I want and don’t have to do anything. I can stay in bed all day if I want.” He also liked not having to hustle for drugs and could get all the pain medications he wished on demand. His friend even cautioned him to treat us staff “real nice” because it was a special place and he should not do anything to get thrown out. But both of them knew darn well what he was there for, and the patient took a guess that he would last for two months and then that would be “it.” He figured the residence was a great warm-up for the hereafter. Nothing like ending on a high note. But before “it” happened, he showed me pictures of the detail work he did for motorbikes, and had me run a tape of a band he had played with on a cassette player borrowed from the recreation room.

The inhabitants at the residence, like the mansion itself, keep transplanting me back to their individual pasts as I listen. With so little future ahead, they prefer to unravel their own long histories rather than poke around their Spartan present. As I listen, I do the opposite of what you might expect from a chaplain: I midwife a rebirth of what has already occurred; I do not flash forward to presume what a patient may expect in the Beyond.

Getting Into The Act

My childhood dream of becoming an actress has come true: relating to others as a chaplain is like performing improv theater, only the “audience” is participating at least as much, if not more, than I.

For instance one evening as I was walking towards one patient’s room, I heard someone just across the hall saying, “Look there goes the chaplain.” I took that as a cue to veer away from my original destination and detour towards that merry invitation. The beckoning voice was the patient Maxine’s brother, and as I walked in, Maxine looked me over with as much delight as if I had been made out of chocolate all ready to consume in bite-sized pieces. We three engaged in the sort of talk that paradoxically refers to nothing much in particular but warms people up to each other. Maxine suddenly stalled the banter with, “I want a hat. I want something around my ears.” It happened to be on the weekend when the receptionist was not on duty, and I was not sure where the donated clothes were stashed. As I stepped out to ask the aides and nurses, they did not know either. I even went over to one of the cooks, and as we were talking about the clothes, I noticed a white thin net the cook used while on her shift. Ah! There was the prop I needed. Better than returning empty handed I could improvise and bring one of those nets to Maxine. I asked the cook if there were more. Skeptical, she handed me one from a stack daintily lined up on a hook.

When I came back into the room I gambled on the patient having forgotten exactly what she had asked for since she had some dementia. Sure enough she enjoyed the attention of having me place it on her head, and her brother laughed along with me at how charming it looked.

That same day, I went to someone’s private home, expecting to see the patient Marge and her sister. Her sister had asked me to come over because  Marge did not have much longer to live. Instead, I saw an aide-turned-friend there who wanted to pour out his angst, not about being at the point of losing someone who he was so devoted to, but about the President of the United States. This was the first time I had listened to political fears as a form of spiritual distress, so like changing my direction from one “stage set” (i.e. room) to another, I had to swerve from the intimate atmosphere of a friend grieving imminent loss of another friend, to the public source of his feelings of vulnerability. This friend told me about how the President has bred in him his own fears and feelings of negativity which he has not confronted in himself before. He is worried about the resultant changes in himself and in our society. By the way, the “subscript” of this genuine alarm over politics may have been a way to hide from his sadness at the patient’s waning days. But as with improv on the stage, I went in the direction the other “actor” chose, not what I knew to be the deeper issue. Perhaps in the next “act” he will be ready to go there.

As I understand it, the way improvisational theater works is that one actor spontaneously starts some miming action or indicates some trait in him- or herself or in the other actors. This is called an “offer”. Then the other actors build on that, and so on, back and forth among the actors or among themselves and members of the audience. On my own “stage” a lot of times I wait and see what the patient will offer as a first cue for me to react to, and then I take it from there. Coming into these unscripted situations and having clients make the first offer is the appeal as well as the challenge of being a healthcare chaplain. It also cuts to the chase for spiritual healing.