Teaching Death to Youth: Toward a Culture of Death Literacy

byJeanne Denney

I have not posted a column here for several months. Main reason? I taught an academic college class in Death and Dying this fall. I didn’t write much, but I learned a lot about bringing death studies to the vulnerable psyche, particularly how youth relate to mortality as they embark on adult lives. It has been way interesting. I share first reflections on the adventure here.

I have offered programs on death and dying in the community for years. Showing up for a program on dying is hard. Taking up concrete details of personal death is exponentially harder. Those that show up usually are in middle age and in winter months when days are short and thoughts of death are natural. Before this class I thought twenty-year-olds had little interest in death and focused mainly on the buzz: clothes, media, the sexiest technology. I did not expect “Death and Dying” to be popular on a college campus. Yet it is. I didn’t know then how much death occupies the thoughts, imaginations and fears of the young, or how unprepared they are for encounters with it. I was surprised when my class filled to capacity at 30. When the Dean’s secretary told me that Death and Dying classes fill pretty much regardless of the number of sections they offer, I was even more surprised. What connection could there be between coming of age and questions of death?

What I learned

Since I have survived my first semester it seemed worthwhile to share what I have learned. Here are highlights:

• The image of death to people in their 20’s is of trauma and drama. The idea of a “good” death was new. I concluded that this was based:
1) on media portrayals of violent and unprocessed death and grief experiences
2) their experiences with youth suicides, overdoses, accidents, gang violence, and the occasional experience of untimely death of a parent or friend’s parent.

• Most were motivated by unresolved grief, personal confrontation with death of friend or relative, or their own life/death questions .

• This age group has a hard time holding the general idea of detachment, or differentiation, as a potential positive. One might suspect that this betrays early attachment issues.

• Students had a hard time generalizing individual human death to the “little deaths” and losses of their lives. Asked to write about large and small deaths of their experience 3 x a week, and given many examples of how they might do this, most chose to process experiences with friends and relatives who died over and over. Most never noticed the seasons changing for example.

Facing the Reaper

At the beginning of this course I gave students three choices for a final project:
1. Creative Arts Portfolio
2. Preparation work for their own dying
3. A traditional 8 – 10 page academic paper.

The thought of preparing for their own dying was a bizarre, even creepy idea to most students at the beginning. By the end of the course 26 of 29 chose to plan for their own death, completing worksheet on pre-death through after death, covering advance directives, rituals, posessions and bringing the body to its final state. Almost all students that did this project reported a reduction in their death anxiety, found it life enriching, even fun by the end. They reported that it gave them insight on what was most important to them. In this they were just like their older counterparts. Many found themselves courageously encouraging older family members to take responsibility for their deathwork as well. I couldn’t be more delighted.

The student’s projects were highly individual, creative and full of life (of course to enjoy this you had to neglect the obvious fact that we were talking of their tragic, untimely death). I observed a few more things about my young contemplatives. I offer them to the curious.

Most students:

1. Felt that it did not matter at all what happened to their body after death.

2. Elected to donate all or part of their organs.

3. Chose the least expensive means of body disposal: Cremation. (No Sky Burials however)

4. Had little or no interest in funeral services or rituals except as it comforted family.

5. Gave high value to limiting family bereavement and maximizing eco-friendliness.

6. Wanted no tears. (Seemed a little unrealistic I told them, but hey, they could ask).

Finally, almost all wanted the “big party”, most with an open bar and a playlist of their favorite songs.

Issues of autonomy came up strongly. Whose funeral was it, their parents or theirs? Would they be allowed to have what they wanted (cremation for example)? Who did this body and this life belong to? Most had not yet claimed it from their families as their own. I was struck by how strongly their own “deathwork” mirrored their current “lifework” of individuation. It was empowering to take pragmatic responsibility for their own death, to assert their right to leave world and body in ways authentic for them. I was reminded that beauty exists only when dissolution and creation work together (consider natural versus plastic flowers for example). Even as they enter adulthood and craft an identity, it makes weird sense for them to have a conversation with their demise. To a person, each student found something surprising and took a large step toward adulthood.

I warned that the course was an initiation. “Death is a life principle” I had told them early in the term. “You aren’t alive without it.” By the end, most had drunk the kool-aid and seemed more settled in themselves, at least no worse for wear. We ended it celebrating both their life and accomplishment.

This kind of “deathwork” is not for the squimish, but with support it seems possible to enhance young life as well as older life. I commend my first young class for wrestling with this difficult material and look forward to greeting my second in just… a week or so.

Your well wishes for their guide are most appreciated.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. She also teaches Death and Dying at Ramapo College of New Jersey.

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com. You can also just hit the subscription icon above.

Douglas Firs Were Our Sanctuary: Remembering an Assisted Death

The following memoir, by hospice worker Beth Patterson, is not a treatise in the rightness or wrongness of a hastened death. It is a story told from a particular perspective of one brave woman’s struggle and choice for self-compassion. Seldom do we get to eavesdrop on such intimate and beautiful exchanges. Beth asks that we honor this as a personal story and not a political statement. Thank you Beth!

Having moved to Oregon after supposedly concluding my hospice career, I’d never participated in a hastened death. In my 20 years of learning ‘at the feet of the masters’ (the patients and their families) and later as an administrator who cared for the professional caregivers, I’d learned some about the organic process of dying. I knew next to nothing about what a more active stance would entail.

So when asked by Andreya, in her late 50′s and dying from metastasized sarcoma, to have a soulful, in-depth discussion about preparing her for hastening her death, I was both honored and a little anxious. I didn’t believe I had experience in helping someone prepare to stop their life before a disease or accident did it more actively. But her request, because of the depth of connection I felt, and still feel, with her nudged me to say yes.

Below is a transcript of our dialogue over a 24 hour period, May 2-3, 2009. It was one of the most intense and rich experiences in my life. Andreya choose to end her suffering less than two weeks after this dialogue, and although I was not there in body when she left I was there in spirit, applauding her courage, grace and dignity.

The following conversation is almost verbatim as Andreya asked me emphatically to write it all down. I did so before I left her home. She had a printed copy and apparently read it several times in the following two weeks. The dialogue somehow served as a touchstone and a grounding for her in those last two weeks, as she did her final preparations.

A Conversation
May 2, 2009

We walked with Andreya in her wheelchair to a place on her beautiful property. Andreya took occasional hits of her medical marijuana. She told me that the marijuanna had truly been a gift through her illness, alleviating many distressing symptoms. I smoked a hand-rolled tobacco cigarette. We found a place to sit under some ancient dripping Douglas Firs. I sat on the bottom of an overturned canoe. There were lots of spaces for silence in this conversation. She started the conversation very directly.

Andreya: I feel so fuzzy. Do you think my grogginess is a function of me checking out emotionally?

Beth: My perspective only: it’s a physiological function of the disease process as well as a side-effect of the powerful drugs you are taking to manage the disease symptoms.

Andreya: I like thinking that it’s a physiological function. That’s pretty helpful, actually. I feel there are powerful forces, things going on in my body. I…where do we begin?

Beth: Hm…let’s start at what the issues are that might be keeping you from being peaceful, or are distressing in some way.

Andreya: Well, there are decisions.

Beth: Can you say some more about the decisions?

Andreya: Well, I feel like I have no experience in dying.

I paused, asking silently for some guidance, which quickly came.

Beth: I am wondering if you’ve actually had lots of experience. Not in physically dying, but other kinds, all through your life.

Andreya: Like?

Beth: Like a divorce. Like other hard leavings in your life. Like all the animals you’ve euthanized.

Andreya: That’s true. I guess I have had some practice. In the emergency vet clinic that was a lot of my practice. There were nights when I’d have to euthanize 5 animals in a single shift.

Beth: And were you present for the animals and their humans?

Andreya: The best I could be.

Beth: So what do you know about the right time and all that is necessary for a ‘good’ euthanizing?

Andreya: The people have to be ready.

Beth: And the place—what about the setting?

Andreya: It should be peaceful.

Beth: What else? What about the animal itself? And the method?

Andreya: Yes, the animal needs to be ready. They’re usually ready before the people. And the method needs to be humane and appropriate.

Beth: So we’ve got the animal ready, the people ready, the setting peaceful and an appropriate method. You really know a lot about this.

Andreya: Yes, I’m not really afraid of dying, although I’m not looking forward to it. It’s just the pain. I don’t want to make decisions out of a state of pain.

Beth: Seems like there are at least 2 scenarios. One where you let the natural process take its course and somewhere along the line, you make a decision to not make a decision and you just slide on out. The other is where you know that you are going to make a decision and it’s just a question of when.

Andreya: So how do you know when?

Beth: You’ll know.

Andreya: I’ve always been a little glib in saying that to others. How the hell do I know that?

Beth: That showed a bit of hubris on my part to say that. I apologize.

Andreya: And yet, it’s true, I will know.

Beth: I also believe that. (Silence.) Have you ever watched the documentaries where one wild animal is the predator and another is the hunted? Many times before the final moment there seems to be an exchanged glance between them that seems to be asking ‘is it the time?’ Some understanding passes between them and it’s done.

Andreya: Yes, I’ve seen that as well. So…my disease is my predator?

Beth: You could see it that way. So ‘the time’ is when you have that moment of understanding and allowing and turn to look at death full in the face and say ‘yes’…

Andreya: That’s very helpful.

Beth: In many other cultures death is not such a scary thing. Maybe religion has placed a level of meaning on something that is basically an unknown, a mystery, an organic event, but not something to be feared. Note: there’s a discussion about the purpose religion may play in keeping society in ‘proper’ order that isn’t included here.

Andreya: Yes. Death is an interesting physiological phenomena. Have you studied it much? Note: here’s a conversation about my experience with death and dying and about her curiosity at the mystery of it all. What is death, anyway?

Beth: I guess you could stand back a bit and ask ‘and what is life,’ for that matter?

Andreya: Oh, yes, that’s a helpful way to think about it.

There’s a conversation about death being artificially separated from living in our culture. We also talk about my work with children’s grief, and what they taught me: grief is to be dosed, interspersed with play and peanut butter sandwiches. And we also talk about how death may be like life a type of dream-state. We both have great wonderment about all this and sit in silence a great deal during the conversation.

Beth: And in other cultures, such as in some Mexican mythology, beings are born with life and death together in the same crucible. Death is then one’s constant companion throughout life instead of a stranger.

Andreya: Hm! That’s interesting. But what would make death then come to the forefront, to become prominent instead of behind our shoulder?

Beth: I’m not sure. That’s part of the mystery. But animals and plants do not seem to fear death. They are competitive for space and nutrients and instinctively try to live, but the actual piece of dying doesn’t hold meaning for them. Maybe that’s where religion has gotten in the way—it’s put a layer of ‘meaning’ on death and the afterlife that is not organic. Plants and animals show us a different way to be with death.

Long silence while the trees drip and the cats wind around our legs and purr.

Beth: What do you think happens to the essence of us when we die?

Andreya: I’m not sure, but it seems like we break up into particles that are constantly being reformulated into new life. Like these little dancing shiny particles in the air right now. Can you see them?

Beth: No, damn it, I can’t! But I believe they’re there!

Andreya: They’re all around us, and the cats are hanging around too. The cats like the particles and they’re curious about you, Beth, and who you are and what you’re doing. It’s pretty interesting!

Beth: Hah! They are surely hanging out! We are both smiling, petting the cats. More silence.

Andreya: I sometimes wish I had more of a path.

Beth: Tell me about that, can you?

Andreya: I think it’s helpful to have a spiritual path of some sort. Maybe it helps you when you come down to dying?

Beth: Sometimes it seems to, but not necessarily. The people that I’ve noted their deaths as ‘well-done, graceful exit, stage left’ are those that have practiced dying throughout their lives, so they ‘get it’. When it’s done they slide on out, without a hitch. They have made practicing dying their spiritual path. In that paradigm, you’ve been practicing your path your entire life.

Andrey: Hm. Practicing. Tell me about that again, my brain doesn’t hold on to these things, but I know that what you just said is important.

Note: We then talk deeply about her experience of being with dying throughout her life and that all she’s lacked is a consciousness, a languaging for this.

Andreya: Yes, but an acknowledged path, wouldn’t that help with the practicing?

Beth: It does help some, but it’s not necessary. Would it be helpful for me to lay out for you how I perceive your particular path? It is just my perspective, though. I believe, and again it’s just my definition, that our paths are nothing more than how we engage with life and the quality of connections that we have.

Andreya: Sure.

Beth: You have a host of very good, deep, ancient friendships. You have sweet connections with your children, your animals, this land, your home, Sam You’ve lived an extraordinary life in the quality of your connections. You have helped people and animals in your practice. You have helped in other countries, working to make your corner of the world a more peaceful place. Your partner, Sam is *anamcara to you, and willing to do whatever it takes to help you through this. That’s a remarkable thing, to end one’s life with all that richness of connection!

Andreya: Are you saying that I could be extremely grateful for all that?

Beth: That’s an option…

We both laugh out loud. Then Andreya is very quiet, very still, looking at the sparkles of light…

Andreya: I wish you could see the sparkles.

Beth: Me too!

Andreya: What about Joan? (Andreya’s daughter) How will she do? I was present for my mother’s death. It was very peaceful, a very good death. And I’ve never felt disconnected from her. For awhile after her death I was almost peeved—like, I can’t get away from her! But now, I’m so glad, it’s almost like she’s part of me.

Beth: Ah! And have you noticed any difference in that connectivity since you’ve known that you are yourself dying?

Andreya: Well, I’m glad she does not have to witness this, my decline. But then again, how do I know that she isn’t?

Beth: Have you noticed any more/less connection with her?

Andreya. Yes, actually more connection.

I don’t say anything, but she sees the inference about her own daughter’s process. More silence.

Andreya. Are you getting cold? Should we go towards the house and get a blanket or you?

Beth: Yes, that would be good.

We move towards the house, settle in with blankets on the walkway.

Andreya: So, how do I move towards my death, less fearful? How do I know when it’s time?

Beth: It might help you to identify the necessary ingredients again (we do this together): timing; people who are going to be staying on this side and their preparation; setting; method. So, if you were looking at a stage at this scenario, how would it look?

Andreya: On the deck that Sam built. Sam is by my side. All my animals are around, except my horse. The birds are all over these feeders, talking trash. My kids… Where is Joan in this setting?

Beth: Where do you want her to be?

Andreya: I don’t know where she wants to be.

Beth: Important question to ask her. You have more conversations with her that need to take place. She cannot be disconnected from you and this important event, but she doesn’t have to be physically present. Same for Tom( Andreya’s son)

Note: A conversation takes place about the differences between how males and females relate to difficult emotional material, how they grieve. Andreya gives some input about how her son and daughter may do with this, and Sam.

Andreya: I guess it’s important to make a plan isn’t it. So that it isn’t that pain makes the decision about how it all comes down.

Beth: That would seem to be helpful. You also have the other option we talked about—just sliding into it…

Andreya: Well, that doesn’t seem to be as pro-active or responsible to me.

Beth: The people who are around you and care for you learn different things in that scenario, equally important. Your children are taking this all in on a very deep level, and no matter how you go out, they are learning about living and dying from you.

Andreya: Yes, that’s how I see it too.

We go in to the house for dinner. Andreya still has a wonderful appetite and we share a delightful meal that Sam has prepared with great love. It is with exquisite ordinariness that we laugh, talk, joke and enjoy the meal and each other.

Later, we all read and then I am honored to give Andreya a foot and leg rub that is delightful to her, nourishing to me, and helps her go to sleep.

The next morning we putz about, and when the sun comes out, we go out and sit in the place that Andreya has identified as where she may want to be when she leaves. We sit and talk, Sam joins us, it starts to rain and we sit in the rain, under the umbrella, with our hearts engaged, talking about life and death as if they were Siamese twins joined at the heart.

Awhile later, I get in my car to leave for my journey home. I know I will not see Andreya again, but our paths have joined for eternity. She is my beloved teacher, my mentor, an honored guest in my heart-home.

On my way home over the Cascades, I stop by a river and take a nap. I wake up knowing that my work is done. I will be a support for Andreya and Sam but I can rest now.

Her death was a thing of great beauty, as described by Sam, Andreya’s hospice nurse was immensely helpful. Andreya was surrounded by her children, pets, garden and Sam, just as we had laid it out.

Andreya’s memorial service a week or so later at her home and gardens was attended by many who wanted to honor this woman’s compassionate life: the same woman who in her humility feared she had no path.

I have been forever altered by this experience, in ways I can’t yet express. I am grateful to Andreya for allowing me to walk beside her during this brief time. And a huge thank you to Sam for allowing me to publish this so soon after Andreya’s death.

*Anamchara/anamcara—a soul friend who in a perfect world is with you through most of your existence, including your death. For most of us these days it is someone who commits to walking beside us through the difficult parts of our journey, and themselves waking up as they help us wake up.

Beth Patterson is a long-time hospice worker, grief counselor, administrator and chaplain who now offers a spiritual companioning service called Finding Ground (www.findingground.com). She ‘sits’ with people in transition of all sorts and also helps develop ceremonies for life transitions. If you would like to see the collages Beth create around this experience go to: Virtual Tea House where it was originally published.

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com. You can also just hit the subscription icon above.

How Old is Old Enough?: Reflections on Compulsive Aging (Part 2 of 2)

by Jeanne Denney

My last column considered the predictability of dying and how it can be trusted to arrive. This week I ponder how we can get stuck in this inevitable process and how “compulsive aging” is a very different thing than vital aging.

I have known more than my share of the very old. I seem to meet them everywhere. Betty is a tiny, spry 98 year old woman who works the local church thrift shop desk. She wears too much makeup over a face that looks like a 20 year old apple, but other than this she presents with the hearing and energy of someone in her mid 70’s. A draftsman I worked with in the bridge business commuted from Queens to Times Square daily on the subway from his 20′s until he was 96. He still out-detailed his peers with a perfect, steady hand. Ray made drawings for Radio City Music Hall, the Chrysler building and the Empire State Building in his youth. At 90, after breaking his hip, he returned to work in a month. Another tenacious man I know of lived independently until 105 after a life of drinking cistern water, breathing oil fumes and heating with wood and coal. He finally suffered “a brief illness” and died. These are no ordinary souls, and my encounters with them seem to be increasing.

There is good reason for that. The over 100 crowd is the fastest growing demographic in America. This makes them a growing curiosity and a pressing issue. People like Aubrey de Grey and the researchers in this video posit that death is an aberation, a disease that can and should be cured. I am a doubter, but indeed many more of us stand a chance of living over 100 years of age than even 20 years ago. Still, these examples aside, it is hard to prove that quality of life is improving for the very old. I have been thinking about these rare souls for clues about happiness, the energy of the body and our ability to stay in it or not. I wonder, honestly, when the scales are tipped so that ultra-aging isn’t worth it.

Honoring Resilience, but… for how long?

There is a tenacity about the very old that is palpable though not quantifiable. If I had to put into one word what they have mastered it is resilience. To be resilient is to have a creative gift for survival. Mainly we assume this is great. But it is hard not to notice that some kinds of resilience in aging seem healthier than others. Sometimes resilience begets a weird rigidity. It begs the questions “How old is old enough?” or when, perchance, does a gift for survival become a terror-driven compulsion, a sign of dysfunction, much like someone who can’t leave an abusive situation?

In contrast to the examples I gave above of people living to a very spritely old age with meaning, zest, humor and quality of life, hospice work brought me into contact with people resolutely surviving their capacity for joy and connection as if they had lost the flexibility to complete a transformation. Many of the very old seem lost between exuberant bodily life and a spiritual destination, neither of which they are connected to. It is as if they are trapped inside a calcified shell that has frozen shut from lack of movement. They remind me of people who have missed a train walking with heavy bags. This article chronicles well the complications of what I might call dysfunctional or compulsive aging and its implications for others.

What it Looks Like

To be clear, I am not thinking exclusively or even mainly about people in comatose states. I am thinking, for example, of an oriented but angry 103 year old bereft of relationship and hearing whose 16 year activity in the nursing home was mainly to obsess about her threadbare housecoat or get lost in nightmarish, paranoid thoughts about her aides. The rigidity of her body and her bitterness together seemed to form a cage that made it harder and harder to move on. Had Margaret been a bit happier or physically supple, I wonder if she might have died earlier with more ease and grace. Instead she was compulsively aging.

There are many forms of compulsive aging. I remember an abandoned 65 pound woman who lived curled into a ball for 3 years miserably fighting, not for presence in a body, but against escaping it. She fought just as deeply against anyone who tried to care for her. What could possibly be holding her in this life but a resolute vow not to surrender to death? Candice was proof positive that resistance to physical death does not a life make.

Compulsive aging might look like a person who expresses wishes to die but feels like they can’t overcome a persistent thought pattern or perceived responsibility. One brilliant 100 year old woman once said: “I want to die, but I can’t because the world is in worse shape than when I came into it. I can’t leave it like this.” Helen was stuck with a sense of over-responsibility for “the world”, a contract that she could not escape even as her means for improving it were obviously diminishing. Behind these examples it seems something has gone awry in the living and breathing process of vital transformation that death is a part of.

When is enough, enough?

That soul question of course can’t be answered by anyone other than ourselves from a deep, unconscious bone knowledge. All I know is that there are deaths full of vibrance and deaths that seem simply an exhausted, confused fight against a feared but unknown enemy. There are deaths that are full of grace and those that seem tortured and overdue. In a word, some deaths have more life in them than others. Another time I hope to write more about these characteristics of different forms of aging.

For now, I hope to be like the spritely Betty in the church thrift shop, but I will take an early death over a tortured escape from a calcified existence many years later. I suspect this is an insight I should take to heart for guidance on how to live,breathe aand move even now at 51.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. (See www.rocklandmindbody.com)

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com. You can also just hit the subscription icon above.

Is Death an Orderly Process? (Part 1 of 2): Probing the Womb of the Next World

By Jeanne Denney

In this column and the next one I am offering a few musings on the regularity of life’s messiest process, and the role of chaos and surrender to the order of things.

Last fall I spent four days learning about the development of the human embryo. Embryology is a stunning field of science. I am still in awe of the intricacy and profoundly regular process of any beings trip from nothingness (or chaos) to the organized life of a body. Its processes unfold with precision and remarkably few problems, yet what lies in our developmental variations shape us for the duration of our lifetime. I took this class looking for clues to the processes of dying. I reasoned that in utero development must give a clue about how we leave the body as well as come into it. Could death also be such an orderly process?

Since death is notoriously messy it seems hard to imagine that the breakdown of the physical body and our relationships is orderly. Yet Eldercare workers can’t avoid seeing a certain systematic regression in aging and dying. In aging, we walk backward through the events of our life and relationships, interpreting and integrating their meanings. We lose abilities we proudly gained as children (walking, toileting, speaking and the ability to stay in a consensual reality) most often in a reverse sequence. As we claimed our independence in early life, so we return to dependence in later life. Finally we arrive in a nonverbal state in a fetal position in a bed. I have often called this state “The Womb of the Next World”.

I like to sit at bedsides with my many questions about this “pregnancy” a little like a scientist with a micro camera in utero. Clearly there is more here than pure loss. As skills and capacities are disappearing, there seems to be something just as surely opening in their wake. Patients pulling into their deeply interior states seem to be involved with an intimate but highly focused process, something hardwired into our unconscious minds, our cellular memory, perhaps even our genetic code. Kathleen Dowling Singh writes beautifully about this in her book Grace in Dying as “Nearing Death Awareness”. As Kathleen notes, death is both a variable and predictable transformation. Just as no one has to be taught how to form an arm or a leg, how to speak or how to walk, no one has to be taught how to go through the transformations of birth and death. We may struggle and thrash, we may go in peace or in wrath, but we will eventually follow the much stronger flow of the outgoing tide that brought us to body in the first place. Some sooner, some later. Some tidier, some messier.

Sitting with Nellie

As a hospice worker it is common to experience rooms where someone has just died or is just about to. The majority of my experiences at bedside in this state have been ones of bliss and joy as waves of energy wash over the room and everyone in it, especially if the death is peaceful. It is, in fact, much like birth, yet the quality of energy is different. There seem to be factors of personal history and variables of support which affect this transformation. Death might be seen as a culmination of a lifetime of habituated practice with self and others. But though the base skill seems to be innate, the relational environment can have profound effects on the unfolding. How can we ultimately learn about this stage of development, support it, accept it and trust it without interfering or imagining that we control it? These are constant questions for any hospice worker.

Just these questions were opening up for a family I was with a couple of weeks ago for a mother/daughter pair as their elderly matriarch, Nellie, was dying. The family had been faithfully waiting for death at bedside for several days and were exhausted. Nellie’s daughter was agonized about leaving for the night. She worried that her mother was suffering because her eyes were open slightly and her breath was labored. At the same time she worried that her presence was keeping her from dying. “We have waited for days. I have done everything…we have told her over and over that we are fine and that she can go. Am I keeping her here?“ She had begun to see dying as a performance that could be failed, and looked for someone to correct what had gone wrong. “Why isn’t she dying? Maybe she can’t do it. What are we missing?” They were in an emotional state of fragility and despair that reminded me of a birth mother in late labor just before the point of useful surrender. In their words I heard the ubiquitous “I (we) can’t do it” that comes with regularity.

When the nurse and I arrived to support, we confirmed that Nellie was not suffering and was certainly in a process that would end. We talked about how people die, what they probably experience and how often they need to do it alone when there is a lot of attachment. With knowledge that Nellie wasn’t suffering and that nothing had gone wrong, Ann began to relax and recount a few stories about her mother. Good will, ease and humor entered the room. Within a few minutes, before they could reconsider leaving for the night, Nellie took her last breaths and died. The joy and radiance of release were palpable in the room for some time. As anxiety left, Grace arrived on cue.

Perhaps there are predictable and orderly processes for all of us in these passages, and ones that we can get better at if we recognize that death, like birth, works in unique but also highly regular ways. While in birthing processes we must learn to attach and effectively respond over and over again, in death we must master the skills of detachment, calm witness and a tough allegiance to love and truth. It does seem possible that we can get stuck in these processes for awhile, something I will muse more about in my next column, but it never fails. In this, nature bats 100.00000000000%. Maybe that is a fact we can take strange comfort in.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. (See www.rocklandmindbody.com)

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com. You can also just hit the subscription icon above.

Dying for Change

By Charles Leadbeater

Recently I ran across a pamphlet from a British organization called “Dying for Change”. Sponsored by a political thinktank called Demos, “Dying for Change” hopes to help transform care of the dying in Britain. I asked its authors, Charles Leadbeater and Jake Garber, for permission to share the preface here. If you would like to read more about “Dying for Change” just follow the link. Thanks Jake and Charles. With all good thoughts for your courage and vision.
- Jeanne Denney (editor)

Bill died at 4am on 18 August 2010, the morning of his 86th birthday, in Ward 3 of Airedale General Hospital in north Yorkshire. His final view in life would have been the stained polystyrene tiles above his bed. The drab room in which he died provided a measure of privacy but little else. The walls were covered with a fading washable wallpaper of indeterminate colour. The room was a workplace for nurses and doctors rather than somewhere someone would choose to reflect on their life and be close to his family in his final days. Bill’s wife Olive would struggle past chairs, push away stands and tubes, and stretch across the metal guards surrounding his bed to kiss him. The room was designed for medical procedures, not for kissing. The ward’s ‘lounge’ was barely worthy of the name. Lit with fluorescent strip lights, its comforts were a jumble of old armchairs, an ageing television and a public payphone.

It was not just the room that made Bill’s dying so impersonal but the ward’s procedures. His relatives struggled to find a telephone number for the senior medics serving on the ward, let alone to talk to them. When Bill’s family met his consultant for the first time it was after his death and she revealed that she talked to patients’ families only when they pestered her. The nurses on Ward 3 were caring and hard working. Yet establishing a relationship with them was impossible: with every shift came a different nurse. Often it seemed as if no one knew what was wrong with Bill. But that might be because no one was comfortable talking about the fact he was dying.

As his family acknowledge, it would be too easy to blame everything on an unfeeling system. His family could not have cared for Bill at home. His wife was 92 and frail. His sons, married with families, were not local. None of them were wellprepared for a direct discussion with Bill about the fact that he seemed to be dying. Everyone had an interest in skirting around the subject. When Bill was asked directly whether he wanted to carry on living, he said he did not see any other option: he did not want to give up on life. The medical profession took its cue from that desire to eke out the last moments of life. Seemingly fairly fit and well, although anxious and at times depressed, Bill had been admitted to hospital in February with an enlarged prostate. An attempt to insert a catheter was successful and he was discharged but just before a weekend, in a rush. When he arrived, home support from social services and district nurses took days to come. Lying in his bed he quickly developed a pressure sore. After another visit to hospital for a procedure to open his urinary tract, the pressure sores grew. In common with many people his age, Bill had other conditions, among them a weak heart. By the time he was admitted to hospital for the final time, in July, the combination of these conditions and the infection caused by pressure sores were killing him. The district nurses decided they could not cope withhim at home. So he was despatched to hospital, even though it was unable to do much for him.

The sad truth

Most of us will die as Bill did, in old age, with a combination of conditions, in hospital. Some hospitals may provide sensitive, high quality care. Others will resemble impersonal waiting rooms, inhabited by people poised uncertainly between life and death. It was not that the staff on Ward 3 did not want to do a good job. They were part of a system that seemed designed by and for the doctors rather than the patients and their families. Too often hospitals neglect the social, psychological and spiritual aspects of dying, which are vital to dying a good death. That social shortfall is why hospitals are rarely the best places in which to die. Bill’s doctors had an ethical commitment to try to mend and heal him. Yet he could not be healed and no one could bring themselves to open a conversation about the fact that he was going to die. Bill’s death was not a tragedy. He lived a long, happy and healthy life. Some of that life he owed to interventions by the medical profession: operations to fix his knees and sight. Without modern medicine he would not have been alive at the age of 86. Yet the medical profession that had extended his life was unable to provide him with a good way to die.

Another way to go….

Once Bill had died it did not take his wife long to work out she wanted to die as well because life without him would hold little for her. Olive did not want to sit alone at home or be parked in a nursing home. She was 92; she’d had enough. Yet before Bill’s funeral could be organised Olive had a thrombosis and ended up in Bradford Royal Infirmary. She went on hunger strike. For weeks she lived on a diet of Ribena. She kept asking the nurses for ‘one big pill’ to see her off. The nursing staff cared for her professionally but also sensitively. Gently they tried to talk her round. Finally her original condition was cured and they let her go to a nursing home a stone’s throw from her home – heavy chintz and pine furniture, with lovely views down the Yorkshire Dales. Olive realised that if she stopped taking the anti-bloodclotting drugs that were keeping her alive, she could bring her life to a close. She did not commit suicide but she knew that she was ending her life. The last time her youngest son saw her she ushered him out of the room with a wave and a knowing nod. She had things to do.

In the last weeks of her life Olive was on a mission to find her way around a system that was determined to keep her alive when she was equally determined to die. Somehow, at the age of 92, despite being frail, weak and losing her memory, she managed to orchestrate her own death, which came with a sense of completion and achievement, dignity and grace, agency and control. Hers was a good death. Yet it felt like an act of civil disobedience.

Olive and Bill were cremated together, their ashes mixed and scattered across their favourite beaches on the Isle of Arran. This pamphlet was inspired by these two experiences, eight weeks apart, in the autumn of 2010: my parents’ deaths. My mother’s was a good death: she lived a long life; she was not in pain; she was surrounded by friends and family; she was in control and so she died with dignity. My father’s death felt like a bad death. He was not in pain but nor was he in control; his death lacked dignity and there was limited scope for relationships with friends and family in the final weeks. The hospital and its systems were not solely responsible for this but they played a big part. Far too many of us, perhaps hundreds of thousands each year, will die deaths like Bill’s, in places like Ward 3. Far too few will die deaths like Olive’s, supported, dignified and in control, close to home and family. This report is about why and how we should change that to give more people a chance of dying a modern, good death.

Charles Leadbeater is a leading authority on innovation and creativity. He has advised companies, cities and governments around the world on innovation strategy and drawn on that experience in writing his latest book We-think: the power of mass creativity.

The First Patient: A Hospice Worker’s Chronicle

By Jeanne Denney

A Hospice Worker’s first patient is often a very poignant experience. Mine was no exception. Nora was a fabulous initiator and is still my favorite patient. I decided to write about it. This story is 3x longer than a blog should be…but sometimes a good story is worth the read. Hope you find it so.

I got my first hospice patient about eight year ago. The first day I walked into her room she was sleeping. I sat in the chair across from her taking her in and scanning the environment. Woman with straight, gray unkempt hair. Broken, half-painted yellow nails. May have been a smoker. Dingy white semi-gloss paint on walls, florescent lights, pink bedspread, broken manual bed with chipped formica head and footboard. Name scrawled in marker on sticky tape over her head. Tiny bathroom with old fixtures, broken tiles and partially detached paper towel dispenser. I left after fifteen minutes.

The next time I came she was awake. “Hi Nora. I am a volunteer from Hospice. I came to talk with you for awhile. Is it ok if I visit you?” I had heard that she could be hostile. “Well, I have to talk to SOMEbody.” she said, as if it was about time I got there. She seemed to have been expecting me. “Get the book. Write this down….”

Beside Nora’s bed was a worn black composition book with scribbles in it and a pen. I was to pick it up and take dictation in it for her. “Write this down for the Journal News. Tell them that the bank was robbed last night and they had guns. They took everything….Wait….maybe this shouldn’t go to the Journal News yet…..no….keep this quiet.” she said dramatically. She had a commanding presence and a conspiratorial attitude. I wrote in the book dutifully, word for word and without argument like a scribe. There were lots of unconnected fragments connected with “…..”s.

Nora threw things across the room at the nurses, she cursed her roommate daily. She shouted incessantly to get in her bed if she was in the wheelchair. She shouted to get to the bathroom if she was in her bed. She was largely ignored and disliked because she was so difficult. Nurses and aides avoided her, the hospice social worker had long since written her and her troubled family off. Impossible. A few months before I met her she had crawled up in her bed and tried to hang herself on a cord coming from the light over her bed.

Nora had her reasons. She was in her mid-seventies, and after a lifetime of struggle with psychosis she was dying of breast cancer in a fairly dismal nursing home room. Her children did not come to see her. They had money problems, their own difficult lives and painful memories.

For some reason she tolerated me, and in the first few weeks of visits I hung on to any shard of sense I could find in the bewildering landscape of conversation. She rolled her eyes at the woman in the next bed. “Do you BELIEVE that they did this?!” “What did they do Nora?” “That they put her in the room with me.” She stopped and leaned over to me in a exaggerated whisper. “She killed my baby. How could they put a woman who killed my baby in here?….” I looked at the woman in the next bed. An old, non-descript woman. She looked like a protestant church lady sleeping with her mouth open. Fairly miserable. Nothing like a baby murderer.

I continued to take dictation and ask follow-up questions. “Write this down. ….The Mafia killed my daughter. They took out her vocal cords and put them in a little plastic bag and mailed them to me.…” Intrigue mixed with a certain number of facts that took me months to piece provisionally together. How many children did she have? Was it really true that her husband was involved in the Mafia? Wait, he had been Irish, were the Irish in the Mafia? Was her daughter alive? Did she really lose a baby? It was my introduction to the landscape of a psychotic patient. Tough first case for a new hospice volunteer.

I began to understand that Nora didn’t just have a mental illness. She did. But she also had fascinating gifts and faculties. It was a more complicated story. She seemed to be scanning the psyches of nurses, nursing home staff and the subterranean political landscape of the nursing home from her bed. She was jumbled and confused in trying to relay it to me, but it hung together a little differently than the Mafia stories. I began to get the sense that she was reading something more literally true in the landscape. “The one with the red hair and high heels came down and told them all off. She is trying to take the whole place over…. And that one with the blonde hair hates her….She wants to leave and take everyone with her.” She described people in the nursing home she could not possibly have seen from her bed.

Acting on the thread of instinct one day I took a risk. “Nora you are psychic. You have a gift”. She looked at me strangely. The alchemical transmutation of the word psychotic to psychic had an instant effect. She probably had never had this experience acknowledged as anything other than illness. She almost seemed to sit up a little more straight in her bed. “You THINK so?” “I think that you see and hear a lot that other people don’t. It isn’t easy in a place like this, is it?” It struck me what a very challenging environment this was for her to be dying in, and how vulnerable she was to the floating hostility, suffering and fear through which she was freely roaming and giving report. What could it hurt to acknowledge that?

As time went on and our relationship grew, Nora became bed bound and began to tell me more and more about her life. She spoke in fewer fragments and what she said made more and more sense in the world of factual awareness. The book started to become less important. She described the house and the town she lived in accurately. She told me about her marriage and her children and relatives (“Boy did that one have cleavage!”). She waited for me to come, holding her stories until I arrived. She called me a different name every time I came, but I knew that she knew me. I brought her an old tape player and some tapes with music: Patsy Cline and Hank Williams. I brought her mints and chocolate, which she loved. Large-print books. I contacted a daughter and asked if she could get some pictures and a few things from home to help her remember who she was and had been in this life. She brought an afghan and some pictures with her sister and actually stayed for a short visit.

One day when I visited Nora had regressed again into dark fantasy that I associated with emotions that were stronger than what she could bear. She had had a particularly bad night: “They had me gagged and tied me up all night in the basement…” “Who had you tied in the basement Nora?” “The Mafia. They just let me out at 4 a.m….They were torturing me. They may be under the bed still…look.” I looked dutifully, listened to it all and finally said as I was leaving, “You know, you need to find some better company. Why are you hanging out with people like this?” She looked at me in a kind of confused way. “Well…I mean…why don’t you call in some better friends?”

Nora was Catholic. And she was angry at the church and with God. We had been able to talk about that. But an elderly, straight-talking Dominican sister had also started to visit her. Between her visits and mine she had softened around the idea of divine grace. What it meant to call in some better friends was not so clear, but that she might need to ask for spiritual help when she went into these dark waters was something that she could begin to hang on to. Nora understood prayer. I suggested that she pray for help when she got scared. She must have been willing to entertain the idea.

A few days later when I came to see Nora she had been waiting for me. I had barely gotten into the room when she said “You won’t BELIEVE who was here last night.” “Who was here Nora?” “St. Michael….Do you believe that….And you won’t believe what he told me.” “Well….what did he tell you?” “He said ‘Take everything in your mind and throw it away just like you are pushing everything off of this nightstand.’ Do you believe that?”

I did believe it. Wise advice for the dying. Nora stayed in a state of disbelief at her strong experience of St. Michael for some time. She was confused because from her point of view this was the wrong saint. It was supposed to have been St. Christopher. We mused over that more than once.”But it is the wrong saint…” “But that is perfect Nora.” “Why?” “Because St. Michael is a warrior saint, and you are a warrior.” “Really?! You think so?” She was dumbstruck by the idea that a saint would identify her as one of her own, or maybe it was that I saw this as logical. Clearly the woman I met a few months before was a warrior raging against insanity, if not her own then that of the place she had been deposited, the insanity of abandonment or illness, or the insanity of the world, or some other insanity that could not be accounted for. It was a clear turning point.

One night after I put the kids to bed I went to see Nora on a vague impulse. She saw me in the hall, gasped, looked as if she was seeing a ghost and began to shout “Are you alive?!! You are alive!! You are alive!! You are alive!! Oh my God, you haven’t died!” I came into the room to see her half out of her gown and with a wild, disheveled look. She took my hand, kissed it repeatedly and continued. “Oh my God, you are alive….I thought you had died.” Sobbing. Joy tears. Hand kissing. Nora was dramatic, but it was still a sincerely intimate moment. I am not sure what I represented for her at that moment. It would appear that I had become a living embodiment of heart for her, and she was terrified that this heart or some last connection to hope had died. Still, it was strange to hear that someone cared so deeply for my existence and my death, even if it was a dying psychotic patient who didn’t really know my name. She cried in disbelief, at the same time clutching her heart. “I have been having chest pains all night. Oh my god, I thought you had died.”

What happened that night is not too clear, whether she was having an angina attack or some other large crisis of the heart. Maybe it didn’t matter. I reported it to the nurses who called the doctor. The hospice doctor came, listened to her heart without comment, looked quizzically at me and said he thought she was ok. She settled. I stroked her head until she went into an exhausted sleep. Then I left.

St. Michael continued to be seen by Nora consistently to her death as her behavior continued to normalize. That is, of course, if you considered seeing and talking to saints to be normal. To the physician who prescribed her medicine this was likely just another delusion, but to me it was different. Nora began to face and grieve the truth of her children’s abandonment as part of her return to presence. She made friends with her new roommate. They talked. She almost remembered people’s names, or close enough. The nurses and aids began to like her and would spend time painting her nails. More people in hospice began to interact with her. She became a hospice success story. “Isn’t it great that we finally got her medication adjusted correctly?” they said at team meeting. A few friends visited. She was not uncommonly joyful and full of newfound longing for life. “I just want to take a sled and go down the hills with the kids. I want to do everything! I want to make love and eat chocolate!” I kept bringing chocolate.

It was a morning in March when I got a call from the volunteer coordinator that something upsetting had happened to Nora. She had had a stroke and been unconscious in her bed for some time before she was found. She was immediately taken to the hospital. She never regained consciousness.

It was a stroke of sweet synchronicity that the day Nora went to the hospital a friend of mine made a spontaneous gift to me of a CD of Coleman Barks reading Rumi. It was a day or so before I listened to it. She had died by then. When I came to these lines while driving the car, I sobbed:

“…..What use now the crown?
You have become the sun…..”

It was an impersonal sob. Her death was much like a birth, a liberation, a culmination, a success, a triumph, a long process, a victory. Something I had lived with her through and, through her, some crazy transformation of my own. Maybe I was feeling something like she did the night I walked in on her possible heart attack. “You are alive! You are alive! Oh, thank God you are alive!” Thank God you are through it. Though what the “it” was, was not clear.
______________________________________________________________________

Of course I went to the wake. Her oldest daughter met me in a business suit and proudly showed me her funerary display. Nora’s casket looked strangely alone amid the large floral sprays with the word “Mother” sprawled in script across them. Perhaps she was now, finally, manageable for them, quiet, contained and at a safe distance. This was complicated grief. There were probably 15 or 20 people there talking casually, laughing. No one looked particularly bereaved.

You left this humiliating shelf,
This disorienting desert
Where we’re given wrong directions…..

I reflected on the fact it had probably been difficult for her daughters to get this together in the few days since Nora died. It couldn’t have been easy to have a psychotic mother. I sat and prayed for her and for them.

I have heard that near the end
You were eyes looking at soul.
No looking now.
You live inside the soul.

I had the vague sense of Nora’s outrage that they put the effort in now after forgetting about her. It felt like she was jumping around in my head shouting: “Can you believe it? Can you believe it? And after all this time that they never even sent me a card or brought me a flower? NOW they are worried about what I look like? NOW they show up?” Or maybe this image was one of my own projections. I talked with it just the same either way. “It is ok Nora. It is ok.” I told her. “They are doing what they know how do for you.”

I wondered what they were going to do with the black composition notebook when they cleaned out her room. I wondered if they, like the nursing home staff, would think that the person who transcribed the paranoid fragments onto paper in an unfamiliar hand was deranged. I knelt and prayed for her as I looked at her face with the makeup and her hair done.

You’re the strange autumn rose
That led the winter wind in
By withering.

I thought about how much she would have enjoyed someone doing her hair and makeup. She looked different. Like someone who had a life I didn’t know. Wherever she was, I knew we were friends. And I was happy for her.

No bother of talking.
Flowing silence and sweet sleep
Beside the Friend

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. (See www.rocklandmindbody.com)

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com.

The Moment of Death: Timing is everything, or…at least something

by Noell Goldberg

This month Noell Goldberg, long time trainer of hospice volunteers and general sage, offers her wisdom on being with the moment of death…or not. Thanks Noell.

Ask my children, and they will tell you I have no sense of timing. I tend to bring up difficult topics at times when they are distracted, upset, or otherwise caught by some emotion that makes it unrealistic to expect they can take in the message I’d like them to hear.

My errors of timing are generally caused by my impatience and egocentric urgency. I have something to say and I want to say it now. I want to do something, and I want to do it now. Or, I am captured by my own emotional tangles and postpone saying or doing something until it is too late. In short, when my focus is primarily on myself, I am limited in my ability to see myself as a small part of a much larger field — the field of my relationship, this particular context, this exact moment.

I know I am not alone. This is a struggle that frequently manifests in work with Hospice and Palliative Care patients. When do we call, visit, offer a suggestion, remain silent, reach out to a family member? Questions of timing abound, and there are rarely clear answers.

To die or not to die?
One of the big questions that our Hospice patients face is the timing of their own exit from this life. Since ultimately we have no definitive control over our own deaths, it is a common assumption that the timing of death is beyond our control. Sometimes, this is certainly true. But many times in Hospice work, we hear a very sick patient say, “I have to live until my first grandchild is born,” and they do. Once, a patient came onto the program, and the next day, her husband died of a heart attack. She told the nurse, “He waited to die until he knew there were people who would care for me. I will wait until his wake, then I will follow him.” And she did, dying the day after her husband’s funeral. We assume the moment of death is beyond our power to control. But the evidence suggests a different truth.

Still,both we and family members too, are concerned when a patient dies without someone present. We feel our timing was off, and it is easy to assume that we have somehow failed the one who just died. After all, they died “alone,” and feeling alone is something we are pretty devoted to avoiding. We see aloneness as a problem, and hey, our patients have enough problems. We don’t want dying alone to be another one, especially when we are so willing to be there.

But here perhaps it is useful to remember that we have accompanied our patient on merely a few steps in the mysterious journey that has been their life. Like everyone else, they have made their journey “alone,” even though they have also been accompanied by spouses, siblings, children, grandchildren, friends, colleagues, parents, and now us. Perhaps if they made that final transition, the moment of death, with no one in the room, this was their preference. When they have spent their last days among attentive and willing caregivers, is it possible to imagine that if they passed away without any of the available people at their bedside, that perhaps this is how they wished it to be?

How much can we help?
It’s been said, “Dying is hard work. The old and the sick should be exempt from it.” Dying — like childbirth and every other transition a human soul makes from one reality to another — is hard work. As caregivers, we help in the work of dying by doing what we can to ease the body, mind, and spirit. But ultimately, the dying person is working alone. And the moment of their exit will probably reflect aspects of their personality that have always informed their thinking, relating, working, living. Was this a private person? Quiet and reserved? Was he more solitary than gregarious? Did this person like her comings and goings to be noticed or did she like to quietly arrive and depart the events in life?

If our patient dies and we weren’t there, or a family member feels guilty because they stepped out of the room, perhaps we can take the larger view, a view beyond how we think things should be. Perhaps the final gift we can give is the honoring of the particular way this soul chose to leave this life. Perhaps we can turn the question of timing over to them, and to the greater Mystery of which we are all so small a part.

Noell Goldberg has been Coordinator of Volunteer Support Services for United Hospice of Rockland for over 11 years. She started a prison hospice program at the Fishkill Correctional Facility in New York where she trains and mentors inmates to care for other inmates dying in prison. She is currently a seminarian in the Ridhwan School, the institutional umbrella for the Diamond Approach, and has studied there for 14 years.

Grief is Contagious: Try to Catch Some (Part 2 of 2)

By Jeanne Denney

Several months ago I wrote that death is generally not contagious, though we often behave as if it is. This month I want to ruminate on grief phobia and the value of being with grievers. What if we looked at grief as a kind of medicine, the true expression of which is scarce, valuable and needs to be shared? And yes, fortunately, it IS contagious.

If you are bereaved, or grieving any loss, you probably feel funny wearing your sadness in public, or talking about it to friends for more than a month or two. You may have noticed that many people don’t know what to do with your grief. Increasingly it isn’t seen as a welcome or even healthy process. Indeed, grief and sadness are now both routinely medicated just after a death as if they are aberrant responses. In this New York Times OpEd (“Good Grief” 8/15/10) Allan Frances notes that grief is being considered for the new diagnostic manual for mental disorders (DSMV). The pharmaceuticals must be delighted. Recently, at the end of a 5 week course on death education, I was asked by participants whether it was appropriate to cry at a funeral. Several people talked about times they had gone to one and wanted to cry but didn’t know if they should. I had to check twice to see if they were serious….these were people who were enlightened enough to take a death education course. “ Wait…A FUNERAL?!?!?” I asked “Has grief phobia really gotten that bad?”. If not there and then, where and when?

Helping people stay “Up” (even at funerals) and “Not bringing others down” are apparently social mandates. We are never more aware of it than when we are in grief. Grieving people often isolate as if they are carrying the ebola virus, yellow fever and bird flu all at once. When they do go into public places or socially engage, it is common for them to rehearse inauthentic behaviors to meet perceived requirements for cheerfulness, resilience, and optimism something like putting on a face mask. Grievers I know seem to feel a responsibility to keep others from the mess of their experience as if they are meeting children too young to comprehend a truth. Surely this is burdensome.

The phenomenon of greifphobia is not new and is clearly unfortunate for grievers. But I am writing about the other side of the problem: the loss for others who have no contact with grief because of this avoidance and confusion. I am suggesting that the bereaved are a rare medicine rather than an infectious disease. We time and again refuse this medicine, preferring to have our illness.

Grieving, it isn’t just for the Bereaved
One way I know that shared grief is a medicine because I facilitate therapy groups with ordinary people. Practicing body psychotherapy, it is clear that unacknowledged sadness, sometimes from infancy or before, works its way into the body and psyche. What have not openly acknowledged or shared becomes “somaticized” (held in the tissues of the body). Healing processes most often require that we acknowledge, feel and release emotions we have held in the body but have not fully accepted and experienced. Feeling genuine sadness is not the same as depression, and usually does not require medication, though it may require time, space, physical release and a supportive environment. I regularly observe the strong relationship between resisting feeling personal sadness and freezing to feelings of other people in our midst.

In The Other Side of Sadness grief researcher and psychologist Dr. George Bonanno of Columbia University, writes that sadness is one of the important emotions evolved to help us through grief and loss. His studies show that people in states of sadness have an inward focus which actually allows them to be more aware, alert and in possession of greater wisdom than people who avoid it. Surely grief and sadness are part of our human truth and I would argue the capacity to hold them is important to maturity, wisdom and joy. Allowing ourselves sadness does not preclude laugher and joy states, nor is it a constant experience. Unlike depression, in which all feelings are largely suppressed, Dr. Bonanno notes that sadness can be an enlivening experience, often interrupted by periods of laugher, connection and many other emotions. It is alive. Likely it is a door we walk through to gain our real life and genuine joy.

Are Grievers Good Medicine?
If tears and active sadness are good for us, how do we find and release them? Watching people struggle sometimes years to feel buried sadness, I know it isn’t so simple. That is why grievers are especially good medicine. Groups dynamics routinely demonstrate the power of one person’s heartfelt sharing of grief on others. There are only a few responses we can have in the presence of another’s expressed pain: we can freeze or feel our own human sorrow. In a healthy group, one person’s tears beget others because truly felt grief really is contagious. Grief, it turns out, is a community phenomenon. When we are around people openly in their grief our immunity is mysteriously lowered and we stand a chance of experiencing our common existential grief. Through this experience we have a hope of making the deep connections to others that we long for.

Don’t attempt this Alone: Learning from the Dagara
I was fascinated to read the accounts of Malidoma Some, an African Studies Scholar and Shaman, who writes about the way that grief is handled in a traditional African tribe. In Of Water and the Spirit, Malidoma describes an African funeral in depth. It starts with the wailing of women. Then a stage is set for the entire community to participate in a cathartic release of both their new and long-held sorrow. Drumming, dancing, music and grieving goes on for days during which time everyone is allowed space to explore their losses as well as their relationship with the world of spirit. Men in particular make use of this space because he notes that while women cry easily, men actually need each other and funerals to cry. These tribal Africans would not think of leaving a bereaved person alone with their grief. I have to wonder how many things would change if we had similar rites in our own culture?

It is hard for grievers to deal with our culture’s denial of loss and death. But in truth, we are all impoverished by this isolation and denial. The benefits of grieving in a collective are not just to the griever, they are to the community. Through them we find a portal through which we can enter the reality of our own primal losses, finding wisdom, truth, healing, and precious inwardness. And while it can be great to experience excitement or the thrill of victory in a collective, these are relatively brief experiences. Grieving in collective is strangely more memorable, and bonds community more deeply. We are united and humbled by loss. It is a doorway that can lead to more true joy and connection. And, it seems, we need each other to pass through it.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. (See www.rocklandmindbody.com)

Death is not Contagious (part 1 of 2)

by Jeanne Denney

When I tell people that I am a hospice worker I often get a standard response: “How do you do that?… Don’t you find that depressing?” The first question is actually quite deep and interesting. (“Yes how do I do that? With what part of myself do I do that?”) But the second one always stumps me. I get puzzled when people expect that I will be depressed in the face of a natural process. Why would I find being with dying any more depressing, I wonder, than attending a birth, watching leaves fall in the autumn, going to a wedding or taking off my youngest child’s training wheels? But somehow, somewhere the idea that contact with death is negative, even a possible contagion to be avoided, has spawned, even though (absent infectious disease) there is little direct evidence to support this. Perhaps because of this and the way that our healthcare system works to use exceptional means attempting to prolong life, more and more people die in hospitals each year rather than at home. This despite the fact that most people express wishes to die at home. Dr. Atule Gwande gives a good summary of how this comes about in this NPR interview: Making End of Life more humane.

Sometimes as a staff person in a Hospice I did feel tired or unsupported. Sometimes I feel sad at the trauma, shock and lack of support for dying people and their families. All of this has an effect on the experience of the people around dying, but rarely if ever do I feel depressed at the fact of death itself. Indeed, when I take good care of myself and have time to build relationship with a patient, the opposite is usually true. In a situation without trauma, once death is clearly coming and has been accepted, I am more likely to leave a deathbed with a kind of joyful, expanded energy as a depleted or depressed one. I continue to do this work because it enriches my life. On a good day, when I come from my deepest desire to connect to the full throb of life in all of its forms, it is extraordinarily uplifting and usually I can perceive that this response is mutual.

Experiencing contact with death as positive is admittedly not a common expectation. Talking of it this way can even be seen as a little subversive. Just yesterday I came across a Youtube video of a spiritual teacher Hindu Swami SivaBaba giving just this teaching. In a nutshell, he advised that to think of death or plan for it causes death: Don’t do it. I have worked with cancer patients that have this idea, and even the American Cancer Society often appears to advance this view in their aggressive stance in fighting death, the enemy. The assumption is common. As I was preparing to format a second class to support death planning (which I call “Planning on Dying: An Exhuberant Life Exploration”) I came upon a blog written by psychologist Wanda Horrell entited: I am Not Planning on Dying! Wanda’s article expressed important truths about mind/body health and the power of optimism and positive thinking on life and illness. I agree with her completely. I don’t wish to contradict anyone’s views or beliefs. Still, is it really a benefit NOT to plan on dying given that the death rate throughout history is still hovering at 100.00000000%?

Maybe it helps to explore the idea that illness and death are different things. Positive focus on principles of optimism is something that is healthy for people of all states and ages. It doesn’t follow that death thoughts are signs of pessimism or that avoiding them is the antidote to illness. What if deeply receiving the contractive principles of life is needed just as much as focus on expansive ones? I am betting my nickel that someday we will find that avoiding surrender to the facts and feelings of loss, aging, death and dying, is at the root of many illnesses and a source of lifelessness itself. At the very least it often brings unfortunate denial and resistance that ultimately increases pain, struggle, stress and suffering in processes around death. Studies like this one show that people who are supported in planning for their own dying, giving time and thought to their death wishes, have much better experiences in the life process we call death. To quote the article:

“Family members of patients who died had significantly less stress, anxiety, and depression than those of control patients. Patient and family satisfaction was also much higher in the intervention group.” (British Medical Journal Website)

Death avoidance sells a lot of products in the United States, and probably the rest of the world. Mania is in, depression is out. Expansion is in, contraction is out. Just as the Victorians suppressed and feared sexuality while they obsessed on death, so we do the opposite. Sex is in, death is out. But for me, being really alive is about the full monty.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. (See www.rocklandmindbody.com)

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com.

Long Term Care: Making a Connection

by Fran Harmeyer

Occupational Therapist Fran Harmeyer offers insight this month on creative use of physical care to meet even deeper needs for relationship for both patient and caregiver in a challenging case. Thank you Fran.

Case scenario: 92 y.o. female, end-stage dementia, multiple contractures. Helen gets out of bed for about 3 hours a day in a custom wheel chair. She is blind,  moderately hard of hearing and dependent in all her activities. She is verbal but her language is word salad for the most part. She knows when someone is touching her, but it is hard to tell if she knows what is happening. She is used to“care”, but she usually doesn’t like it and “holds” against efforts to range her limbs during washing and dressing. The aides  are having a hard time, now, because of her habitual posture of crossing her legs in her wheelchair and in bed. The OT referral reads “Nursing unable to open legs for care”.  After consulting the charge nurse, I find that the family doesn’t want any splinting or bracing. The nurse tells me the resident has been on prednisone for so long her skin tears “if you look at it “. I say “OK…” and I’m thinking “oh boy, this will be an easy one!”

 I go to see Helen at her bedside. She looks at me with unseeing eyes and when I touch her shoulder to let her know I’m there, she smiles a small toothless grin and says “What is it Dearie? Is the criketh smalltic sogme? Well, I told them tiljaw mopple hhuridge.”

I lean down to speak close to her ear, hoping she will hear the calm in my voice.  “Good morning, I’m Fran and I’m here to make your  legs feel better” I say hopefully. She smiles again and I’m not at all sure she understands, but  I feel like there is good will between us. There are pictures of various family members above her bed and as I hold her leg gently I take a snapshot inventory of her life.  Apparently there was music, apparently there were children, grandchildren and maybe great grandchildren, I’m not sure. There was a husband confirmed through several decades of pictures. She was a snappy dresser. The 1930’s pearls and round -necked sweater portrait and the ‘mod’ jump suit of the 70’s proves that. She would have been a friend of mine, I’m sure. Maybe someone my mom would have known. Well, back to work. 

So I begin.  I  rock and hold, rock and hold and she begins to release the habitual knee crossover.  Occasionally, we chat, she in her language and I in mine. There is a definite give and take, energetic more than anything else. That’s the thing about people like Helen. The nature of relating is always different from ordinary interchanges. If you’re open to different languages, like the shifts in a person’s energy, your patient will respond to your energy and bam! You have a connection.

Helen inspires me to sing a little. I choose “You are my Sunshine”, a favorite from my own childhood, and I know it’s an oldie. I doubt she can hear me. She says “What dear?” and then sighs “oh” and I feel her leg relax again. It took a few sessions to get her right hip to neutral. Of course, it didn’t last. I never did get her left hip rotated at all. Her overall passive range of motion was improving remarkably in spite of those limitations. We were finally able to comfortably place a small soft wedge in between her legs so her left knee was no longer in danger of punching a hole in her right thigh. The Aides reported a much easier time doing her care, so I showed them what they could do in a few minutes during their care to help maintain the range I had achieved during our sessions. I discharged Helen from skilled services.

I had fallen in  love during my work with Helen. Our relationship had deepened with every “conversation” and every touch. At our last session, I squeezed her shoulder reassuring and  she returned the gesture with a toothless little smile.  This case wasn’t easy, but you never know how you will experience your most significant treatment.

Frances Harmeyer OT writes little stories about the people she meets in the world of inpatient rehabilitation at skilled nursing facilities. She is currently completing a Master’s Degree in Geriatric Health and Wellness. As a rule and on a daily basis, she is amazed by the variety of human experience at the end of life and is a strong advocate for choice at any stage of life.

Contributions to the Kairos Network Blog are made by its members and others. If you are interested in offering your stories and insights to this blog or joining the Kairos Network, please send me a note at jeannedenney@gmail.com.