Folk Philosopher

Ricky, who designed and painted parts for rare cars and motorcycles, proclaimed: “I’m gonna drop dead in two months.” That is how he opened the conversation when I met him for the first time as my patient. Talk about cutting to the chase! Quickly adjusting gears from an opening greeting to this steep fall in topic, I asked if he was afraid of death. He replied, “I am not afraid of things I can’t change. I’m only afraid of things I could change but I don’t.” Ricky was not able to elaborate. He moved off to the relatively lighter topic of the motorcycle he built for himself and decorated by himself but would now have to sell (for obvious reasons).  Maybe he meant by his remark that he was afraid of living with guilt and regrets. Or maybe he meant he kept doing things that made him unhappy.

I can only speculate, but what grabbed my attention was that Ricky feared dealing with choices more than dealing with fate. Usually it is the reverse for most of us, is it not?  Perhaps for him, uncertainty and lack of confidence to better himself was scarier than the certainty of his fate. Can’t control it? Then no responsibility for what happens. There is just sweet surrender.

Maybe a small part of us in some remote corner of the psyche can admit to identifying with Ricky. We can be passive about certain things. Perhaps what we really fear is having less and less control over doing a given thing differently because we have built thicker and thicker emotional walls to surmount. This then blurs the distinction between fate and choice. I trust that our self-sabotage is far scarier for us than any Halloween image we may encounter tonight.

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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.

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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/

How To Have The Final Farewell Without Fear

It’s about time I figured this out after nine years as a hospice chaplain. A patient’s daughter showed me how to tamp down my intermittent fear of death. And you don’t even have to buy into an afterlife to value what Jill said.  It was a “usual” day at work, and I was talking with her as she was nearing the point of losing her loved one then and there. She just up and made the following aphorism:  “When you are tired, you go to sleep. When you are Tired, you are ready to pass on.”

Naturally she did not “capitalize” and “bold” the “t” with some auditory equivalent, but this is what I pictured as she said it. Depending on what “tired” writ large suggests to you, I believe whatever you come up with would illustrate what she meant, making it a superb aphorism indeed. When my turn to die comes, I think being Tired will mean feeling satisfied that I accomplished and enjoyed personal and creative and professional goals but at the same time having such a low physical quality of life that I will be good and ready to say bye bye. Maybe for someone else it will mean once all their loved ones are gone, they will be ready to leave everything else behind. And for someone who believes in an afterlife, (I am an agnostic in that regard) it may mean they are ready to join those who preceded them, continuing their love on a different level.

Like the aphorism, it may be wise to keep this post unusually short and conclude by asking you two questions: (1) Does this lady’s remark mean anything to you too or does it seem trivial and/or obvious? (2) If you do find it meaningful, what might make you feel “Tired” enough for your own farewell?

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.

The 99.5 Percent Solution

A short cartoon, just one frame of Charlie Brown and Snoopy, has provoked an awful lot of thought on my part. Snoopy is taking it easy as usual on top of the doghouse and Charlie comes round to vent to his buddy and perhaps imbibe some wisdom. He has some news for his dog: “Someday we’re all gonna die.” Snoopy retorts, “But not on all the other days!”

I told this joke last Wednesday in an unlikely place for a not only Reform but female rabbi: A Chabad Center. At this very Orthodox venue, where the male host would not shake my hands in case I was “unclean” from a feminine characteristic (never mind my postmenopausal age), I was invited to be on a panel alongside an Orthodox rabbi to discuss, “how to make our lives better now.” No sweat, I could handle that question. I was less sure about the venue. I Tweeted, “What was a female Reform rabbi doing in a place like a Chabad Center in Bedford Hills NY? To discuss our mortality but of course.”

The Charlie Brown joke got surprised laughter from the crowd of Boomers and Generation Xers. Whew, I would be alright. But really, the cartoon captured in one sentence one of my main observations that night, which is that contemplating death can tune us in so much more to life, and to what we want to continue and discontinue for our remaining allocation of days. Snoopy the sage also intimates that we should appreciate and savor all those other days that are left.

Savoring life by staring at death may be a commonplace. But how about this? I told the group that sometimes my work in hospice intensifies some of those days that I get to live. On such an occasion, objects seem more present, more “there.” Sounds are richer, reflections off of water brighter, overheard talk more poignant, smells more pungent. I stand in the inscrutable swirl of existence.

During the question and answer period, many questions hinted at fear of death. They asked if people tend to accept it near the end, or whether everything falls into place for them at that point. I sensed the yearning for ultimate answers, which of course no honest human can provide. I gave the consolation prize of explaining how chaplains at least strive to clear away inhibiting agendas and provide a safe sacred space with open-ended questions. This and abundant time to listen lets persons articulate their thoughts without censoring them for family and friends. This way they can then clarify to themselves what their life story has been about.

But you know? Maybe humans don’t have the answers, but Snoopy makes a good point: Around 99.5% of the time that we are alive we are not going to die. Why worry about that less than 1% exception?

What’s Your Hurry?

You would think that if you were nearing death but pain-free and not depressed, you first choice would be to stand anywhere but the head of the checkout line that the Angel of Death was in charge of. If anything, most of my hospice patients jostle to stay at the back of the line or pretend there is no line in the first place.

But every so often, a hospice patient says to me, “When I wake up each day, why am I still here?” Or more generally they will ask, “Why am I still alive?” Or more directly, “I have said all my goodbyes and accomplished everything I wanted. I am at peace with the end. I am ready.” In other words, the spirit is ready before the body. I suppose it is a bit like getting all ready to move out of a home, with the van all packed up to go, but then an unexpected delay at the new locale forces you to stay put indefinitely, and you even have to unpack a few things as you wait in limbo.

Since there is no way I can sneak them ahead in the line, as hospice “neither prolongs life nor hastens death,” what can I tell them? How can I as a chaplain respond to “Why am I still here?” As with any discussion where the answer lies within the individual asking it, all I can do is ponder along with them and wrestle with this existential question together. I may suggest answers I have heard elsewhere, which may in turn help them pull up their own concern. I may open with, “sometimes there are loose ends where something is not resolved. Social workers have told me that you cannot be finished until you have looked back on all the crucial things in your life, or until you have reconciled with someone important.” Usually I get a “no not that” to such remarks, but saying nothing can be even more unsatisfactory to them because I suppose a crummy answer beats nothing at all. So we go on brainstorming. What still gives them meaning now? What memories keep coming back? Is there something else your family needs to hear from you or you need to hear from them?

One time when I was with such a patient, she suddenly reached into herself and came up with her own answer: “Maybe I am still alive because there is some future good news in my family that will fill me with much peace and contentment.” Not only was that a magnificent answer for her, I think it is one that all of us should keep in mind.

My Fascination with Detractors

As I was setting up my display table for a book reading at Crane’s Mill Retirement Community, a woman hurried over to point to the subtitle of my book and say, “Why would anyone want to know what other people said at the end?” As I answered, I had the feeling that no answer would do, because after I did so, she retorted, disappointment marring her face, “That’s what I thought you would say,” and took off before I could refine the dialogue further. My answer had been, “As we hear what people say at such a poignant and intimate time, we can gain some insight as to what is important and meaningful to ourselves, and ponder how we want to spend the rest of our own lives.”

I wonder what she was after, and why she was so unsatisfied by my answer. Shall we speculate? (I say “we” because you can respond in the comments section after this post.) If she had lingered longer, perhaps our dialogue would have gone like this:

Me: What do you wish I had said?

Her: Well I’m not sure, but that is the expected answer.

Me: (Nodding in agreement) Uh-huh. A canned answer.

Her: (Flustered) Well no it’s you see it’s just like wanting to know what is going through a prisoner’s mind before they get executed.

Me: What would be scary about finding out?

Her: Oh I don’t know about scary. Some things are better left to the imagination.

Me: My curiosity does get the better of me sometimes.

Her: I suppose there’s no harm in that. But why about such a….such a (look of distaste on her face) subject.

Me: I guess finding out what people think towards the end makes you uneasy. Maybe for you it’s not like what people say who are about to start a new job or how are about to retire or who are trying something else that’s new for the first time.

Her: Yes, those are different.

Me: (I keep quiet, wondering if I’ve struck gold.)

Her: This is too close to home. (She pauses and I refrain from any potential diversions from what she needs to articulate.) It’s private. We shouldn’t know about what other people say. It’s like, I don’t know, it’s like catching someone in their pajamas. Like you first said, it’s a very personal time.

Me: When someone is dying, or looking back on their life as a whole, it can be very intimate. And when we hear about these conversations, we can feel very vulnerable and unprotected. Perhaps you have lost a loved one recently. I hope, though, that in the spirit that I reveal these encounters, that readers will feel accompanied and understood rather than intruded upon.

Her: (She nods and thanks me, leaving me wondering what even deeper layer would evolve if we were to speak at a future time. Had she lost someone recently? Had that person not talked with her towards the end and left her feeling alienated? Had she herself not broached important but scary subjects and regrets not having done so while she still had the chance? Perhaps she did not like my initial answer because it reminded her that she failed to make use of that intimate and irretrievable time.)

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You: (If that woman had engaged in a dialogue with you about her repugnance at finding out what other people say at the end, what other direction might it have gone?)