by Jeanne Denney

Last week I stopped by to see a patient I have incredible guilt about.  In my arms were a stack of clothes I had hurriedly gathered from racks of a church thrift shop and laundered in time stolen from my work.  I hoped that they would fit.   I was responding to a call from the volunteer coordinator that Jenny needed summer clothes, could I get them?  Yes, I said.  I should feel good about myself, right?  But as I drop them off, I don’t.  Jenny is a patient that I have been seeing on and off for about 6 months that were chaotically busy for me.   I have hardly seen her, or not nearly enough. I forget about her regularly.

Jenny is a slight and feisty woman of Italian ancestry around 90 years old.   I don’t know much else about her.  I know that she never married and doesn’t have children.  She has a niece somewhere that comes to see her occasionally, but not often.  I know about the cracked picture of her mother holding a dog.   I fished it from her bedside drawer.  I know that her dentures and glasses are lost, and that there is a small hot pink handbag in her drawer.  This is about all six months has taught me.   Jenny is also hard to understand.  She mumbles incoherently and repetitively, but she is occasionally clear.  Like one day she told me that she grew up in Brooklyn, and had 4 older brothers.   Another that she wishes she could have pizza.   I know that she enjoys her meals,  feeds herself decently well, gets angry with people who mess with her, and has no problem kicking you out of her room (such as the first night I visited her) “Get out of here!  Leave me alone!! I don’t like you!!” She is tough.  But in six months of me sticking my head into her room for short visits,  playing her music while she settles for sleep, or sitting with her during dinner she has come to recognize and tolerate me.  “Oh yea, I remember you Gabolla.”  She calls me and almost everyone “Gabolla”.  Not a clue what that means.

The truth is, I haven’t been anyone’s idea of a “good volunteer” with Jenny.   Good volunteers schedule regular visits, get to know their patient’s lives and longings, think about how to delight them, connect with them in all kinds of deep and meaningful ways.   Right?  Well, that is what I did in many good years.  Now years later, I am mainly teaching and writing instead of doing.  No longer a consistent volunteer,  I am a team extra. Is it time to stop volunteering?   I don’t want to quit, but is this fair?  Should I just hang it up?On this evening I had those questions.  I had not visited for over a month.  I had little time, just enough to bring the clothes.  I was weirdly embarrassed.  If I wasn’t going to be a devoted person in her life, what right did I have to pop into her room like a do-gooder as if expecting praise?

When I arrived Jenny had just been put to bed after a long day in her wheel chair.  Cartoons were on in a dark room.  “Hi Jenny”  “Oh it’s you Gabolla.”  Her face lit up.   “Yea, I remember you.”   I took her hand, almost wishing she hadn’t remembered.  “Yea, it has been a long time since I have been by Jenny.  I am sorry.  I have been gone.”, I say (true enough).   “You are working Gabolla.   Thank you for coming.  You are a good person.   You are a good person…” she said over and over.  Though I am certainly not feeling this, I wonder how she knew to say it.  I stroked her hair.   “I need to do your nails.  Next time I will bring nail polish.   What color do you like?”  Small talk.   “I brought you some clothes Jenny.  They said you needed them.”  “I don’t need no clothes.”  “Well I brought them anyway.  Want to see if you like them?”  One by one I held up tops, pants and a nightgown.  Too big. I don’t like that one.   “Oh, I like that one”… a knit top with bright pink flowers on it.  I liked it too.  “You are a good person”, she mumbled….”You’re like a daughter.”

Like a daughter?!  Guilt doubles.   I remember that Jenny never had a daughter.  What kind of daughter would be so remiss?  Me, the hospice slacker, a daughter?   But the guilt did have a very familial feeling, one I know hospice families live with constantly, especially when there are young children, work demands, family crisis, illness or when family lives at a distance.   The truth was, Jenny didn’t expect much from me.   She had been here for years. She did not know I was a hospice volunteer or hold grand ideas about what I should do for her.  She just knows that now and then, out of the blue,  I show up to hold her hand, bring her garden flowers in a glass jar, ask her questions, play her music, bring a new top she liked or a gift.  Like a daughter.

When working in a low-budget corporate nursing home, short of moving in or taking them home, how can we not feel guilt on these visits?   The environment and its workers are depleted, the situation usually shocking.    The resistance we may feel just getting out of the car to walk to those doors can be large.   It sits in our conscience like lead.   We can’t fix what we see in just a short visit.   Does it matter?  In short…Yes.  Because most often just what we are able to do, in human limitation and ineptitude really does help.

“Thanks for knowing I am here...”

Years ago an familyless patient in a run down nursing home said something to me I haven’t forgotten. “You don’t know what it means to me that you know I’m here.”   Those words have been my guide post in guilt.   She didn’t say “what it means to me that you come..”, but that I just know.   Awareness itself seems to matter: carrying patients in our thoughts, praying for them,  thinking about their needs, even when we can’t get there, even struggling with  our aversions to going.  Could this daily, unseen inner “work” also be service?  

I am not suggesting that volunteers neglect patients, only that we might drop idealisations that abound in hospice work:   the inevitable feelings of “if only I had done/given/stopped by/said…” (to have made it more perfect), or the moments of death that go unaccompanied.    We are human.  Just like families.  A little can be a lot.    Sometimes our patients know more about what is enough than we do.  Hey, maybe guilt itself does some of the work of care.  But always,  present or not,  if we show up for the lessons, they will be given.

A silent thanks Jenny for this one.

 

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All things, if they are alive, transform.  Meaning, there appear to be beginnings and endings in them.  The Kairos Network Blog is no exception.  Through writing this blog a yearning to develop larger ideas about life, illness, birth and death further and more generally was spawned.  It begot a new blog child (called The Pendulum) that is going further.  Here are some of my musings about how this new blog came into being as I wholeheartedly invite you into it.  

The Pendulum’s work is to teach about regulation, about moving with order and grace through the larger arcs of the bigger life I call LIFE (not just “life” in a body).  We could even say it will teach that thing called Wisdom which puts forth clearly that what is new is not the opposite of what came before, but of one piece.  These days it is almost all I teach, and I will be teaching it here.  

As I note below, the Kairos Network Blog will continue with posts from guest bloggers and myself when it seems right.  I continue to welcome your writing here.  

by Jeanne Denney

—————–

Last fall a friend of mine was teaching a class in a local college called “Sociology of Aging”.  Typical class of about 25 suburban 20-something year olds.  It was the first time that she had ever taught this class, and she was finding the class kind of shut down.   Part of the class requirements were to interview an older adult, but after a few discussions Sue realized that they were actually afraid of old people, looking at them, seeing them, being seen by them, talking to them.

What were they afraid of?  I wondered.  Old people aren’t usually powerful enough to be threatening or aggressive.  They are largely ignored.  They are generally very happy for attention and companionship.  They like to talk if they still have the capacity.  They like to be listened to. They usually like to be touched.  What was it that they were afraid of?  Toothlessness?  Crooked joints?  It was a puzzle.  “Jeanne, come talk to them…  I think that they are afraid of death.”

I can’t remember what I presented.  I think I talked about how there is a life principle of pulsation that distinguishes all life forms, but that it is also present in all forms of nature.  I talked about the complimentary principles of contraction and expansion, about their balance in coherent states.   I talked about how most everything in our minds and bodies works on this principle.  I had everyone breathe three times in and out to experience it.  Then, after having them hold the different points in the in and out cycle of their breath, I had them experience the discomfort of resisting the movement of pulsation. I made the point that if we are going to be alive, death has to be a part of the equation.  Then I talked about how marketing and media that is so much of our culture generally celebrates only the expansive principle.  The rest is considered trauma.    I asked them questions like these:

  • “Have you ever had an experience with someone aging or dying?”.
  • “How does the fact that we only celebrate expansion (such as the stage of life you are in) impact people who are facing aging or dying in this culture?”  Did they think that the aged were their opposites, or something in aging was going to consume them?
  • I asked “What are the gifts of aging?”

I listened to them shyly talk about their encounters with people who were sick or who had died, grandparents mainly, some aunts and uncles, some friends.  It seemed clear that when they had heart connections with real old people in their lives they were enriched by contact, but somehow in the abstract, it seemed that the very idea of the pull into elderhood seemed a threat, as if they were going to lose their tenuous hold on the adulthood they were trying to birth by being in touch with it.  They were afraid to touch the tide moving in the opposite direction.  

At one point in the conversation that ensued about pulsation I remember turning to a young man and saying:  “What I am trying to say is that Death is not the opposite of Life!”.  He was silent for a moment, and finally responded.  “Well, if Death is not the opposite of Life….what IS the opposite of Life?

That was one of those rare and beautiful moments in teaching when teacher and student are one.  I responded from some place in the black box of my being, a place unreachable by will, intention or the human ego, unreachable without the students question.  After the long moment I returned:  “Why does life have to have an opposite?”  The words fell like a thick stone into a still pool.  We both fell still, knowing we had been given a large rawhide to chew on.

And chew I have, for several years now.  In that response was nested my work most likely for the rest of my life.  Not that it had not already started, but it began to gain a clarity.   Teaching the unity of death and birth, meaning the nature of life itself as pulsation and energy, not just bodily identity, this is my work.   Of course this has been done for gillions of years in wisdom cultures, but it is clear that we need a new lens, a new language uniting scientific and poetic languages with experience, a new way to discover it and permission for the same.  And so I am showing up to speak and write and teach about all of this in a new form.

To me it is clear that wrongheaded conceptions and definitions of life and death are at the core of most human ills, and that right and even more scientifically accurate viewing of both are at the core of (yes I will be grandiose), saving the planet  ; – )  and….even having a good and happy life.   This is all a long way of saying that I am starting a new blog where I can support myself in this task.

Does Kairos End?

I started this blog with the word Kairos.  I love this word deeply.  It is a greek and means non-linear time, perhaps even magical, serrendipitous time,  the place in the heart where all things start perhaps between the beats.   A non-dual place of true opportunity and blessedness.

For the past few years I have offered  posts here in the Kairos Network Blog, and hosted wonderful writers in the hopes of just advancing dialogue on end of life, a kind of sandbox play for caregivers.  I am so grateful to those of you who have read, shared, commented, supported, contributed.   It didn’t need to be a success in the ordinary way (you know the marketing, branding way).  Indeed wouldn’t that take away from it?  I don’t know how to do that kind of success anyway.  I didn’t intend for it to feature just my experiences (unfortunately it didn’t quite work out that way). My blog production fell off in part because I was doing less active end of life care and, well there is so much more I really want to write about, as important as this is.

The Kairos Network Blog will definately continue and I will emphatically rejoice to accept guest blogs from caregivers ready to write and reflect coherently about their aging parents, their own illnesses and family members.   I may change its appearance, and I will occasionally post here about end of life care issues myself, but mainly I am refocusing my energy to a blog called The Pendulum and will make a regular committment to write about the really big picture (see upcoming workshop!) and how it manifests in our daily lives at any age, the life force itself as an entity we can directly perceive at work in self and others. How are birth and death related in these waves?  If LIFE is movement, how does it move?  How we can see it at work? What have things as diverse as electromagnetism and trees taught us about it?   How do we learn to take care of and sustain it? You can find it here.  Seem vague or boring?  It won’t be.

Come to think about it, of course this is a kind of death/rebirth project.  The Kairos Network Blog is not ending, but it is transforming and connecting to its new offspring.  The Pendulum will keep time in a different way, hopefully keeping the mystery of the movement of time alive within it.

I hope if you will consider popping over there right now and hitting the Follow button (upper left).  I will welcome you as in moments of transformation all things need their nurturance.

Yours is so welcome.

With peace and good heart and thanks.

Your friend in the love of elders,

Jeanne

Jeanne Denney is a therapist, hospice worker and death educator in the Greater New York area. Her website is http://www.jeannedenney.com and email is jeannedenney@gmail.com.  Friend me on facebook!

By Jeanne Denney

One surprise of being with my father’s body after death was discovering how the body itself transformed in the five days before burial, and that its process mysteriously helped me through these days.  I knew something of the value of being with a body after death from reading Tibetan Buddhists and deep experiences at the home funerals of Anthroposophists.  Still,  I had never experienced it so directly.  Since I was curious, I spent some time each day  witnessing these changes.  Dad’s body seemed to relax and unfold like a flower releasing a message.  By the forth day it seemed to fold inward again ready for burial like as if withering and preparing to drop its seed.   As I loved, honored and released this body, my grief moved with it.  Death midwives such as these and documentaries such as this one (A Family Undertaking)  point to the fact that this might be true for others as well.  

The courage to touch and be present with the body of a dead one is unfortunately so rare that these subtle processes usually go unnoticed in refrigeration units. Perhaps only morticians observe them. At wakes, we seldom touch the dead or track the body’s subtle changes through time, distracted as we are by conversation, grief, shock, formalities or the eternal question of “What do I say to the family?”.  My family seemed puzzled by my time with Dad’s body after death. Finding closure with the dead through the body may disturb you too, or maybe it will exhilarate you. Whatever response you have, you will probably have one.

The rites of burial and memorial service were also important for closure, but in more traditional ways.  I was surprised to step into an active role in leading burial rites and to publicly reflect on his life at the memorial.  These small acts of being with, of care, ritual work around burial and public witness were tiring, yet each brought essential gifts to closure and healing. I share notes from journals below.  Please see Previous posts for Part 1 and Part 2, which concern our last visit and my spiritual experiences with Dad after death respectively.

This series is offered in service.  Thanks for being here, reading it and passing it on.  I welcome your feedback and experiences here on the blog and hope that you will continue to follow.

Hit the “follow” link on upper left if you would like to continue to read more Kairos Network Blogs.

In peace.

November 7 – Planning a Funeral

Here for the second day working intently on the hard tasks of death: services, burials, caskets, clothes, pictures, items from his life, flowers, emotions, family. Mary, Beth and I doing funeral arrangements, a bit slapstick, matter of fact, perfunctory, jovial, then weeping in strange moments:  opening the garage refrigerator to the smell of apples, finding his watch on the nightstand or a torn envelope with notes written in his exotic script. The recliner where Dad sat for the past few years is empty. No one wants to sit in it.  Beth puts a rose, a candle and the picture of him in his dapper brown hat next to it.

When we approach the funeral home, we find a grand Prarie-style house from the 20’s, with massive steps, giant doors, high ceilings, wide staircases and large oil paintings of ships on stormy nights. Its deadly quiet as if no one ever really goes here. In fact they don’t. Apparently westerners never go to a wakes or see bodies. They do memorial services. Even Dad’s widow, Betty (from Montana) at 80 has never been to a “visitation” and was considering not going to this one because she has a cold.

The funeral director meets us at the door.  He is a sweet man named Dan, shy, decorous, skilled at framing sensitive questions that seem ponderous or funny to us. For example, his serious explanation of why we won’t be able to run stoplights on the way to the cemetery. Dan wears the ubiquitous black suit, nods a lot and seems to have to be cautious about smiling. We go over the desired services and “family wishes”, the flow from here to burial to memorial, timing, staffing, death certificates, obituaries, notifications, printing of cards, movement of flowers, cost, payment methods. In sum: the mechanics and finances of taking a body from death to earth. Our matter-of-factness and humor seem disarming to Dan, but welcome. Smiling and laughing breaks some morticians’ rule.

Asking for the Moon

Near the end of planning, I surprise myself by asking “Would it be ok if I come and help you dress Dad tomorrow after the embalming?” Dan seems taken aback and clears his throat, “Ah, well… we have never…I don’t know, no one has ever really asked this before.” He seems to run a quick defensive checklist (liability, hassle factor, my mental health, will he disclose secrets, will I be hysterical?).  I propose to cross a sacred line. The dressing, done for centuries by family members, is now in the hands of specialists. “But, ah…I don’t see why you couldn’t do that. We do try to accommodate the wishes of families.” Dan seems as surprised at his answer as my question. They agree to call me after the embalming tomorrow.

Dan leads us upstairs to the casket room by the elevator. The three irreverent sisters find the commercialism of the scene funny. The lid inserts, the Lord’s Supper, “Mom” with roses, golf clubs, sunsets, aphorisms, gardening tools. What Dad most wanted for his death was a lengthy obit with a picture of himself in the Oregonian. This, it turns out, costs a very pretty penny. He wanted a burial, but happily we know he was indifferent about caskets.  We pause just a moment at the lovely carved cherrywood ones (for 7-8,000$), but unanimously elect the second cheapest model, still over 2000$. (FYI You can get a perfectly good casket from BJ’s or Costco for under a 1000$, and if you are ok with a wood box, for 400$).   Who was going to Costco.

First Sight of Death

Tasks finished, Mary and I ask to go to  see the body. We, the two children absent for his death, needed it. They were expecting us.  As we came in the room there was an ever so small, inner and inaudible gasp.  An oh my.  To be in the presence of.

Our father.  About 40 hours post death he lay on the gurney cold, unembalmed, looking strangely and completely like himself. The expression on his face is one of wisdom and fighting, a severity, a twinkle. There is love and knowing, a sorrow that he actually rarely showed in ordinary life, but here it came out unearthed, expressing directly and without manipulation, a final koan. A slight crassness, a depth. The drawn thin line of his lips slightly drooping. His set jaw, terse like his Republicanism. His body is still familiar. We wept silently and held his hands. I stroked his cold, bald head, the one I always leaned over to kiss while he sat in his recliner.

In the last weeks before death, two gorgeous-hearted caregivers from Tonga alighted to care for Dad and Betty. Godsends, cooking, soothing, helping.  After his death these near mythical women washed and dressed him ceremonially in his bedroom.  The description was as a scene from the Japanese movie Departures (Tongan style).  Sweet comfort.  Mary and I found him still in these clothes: white shirt, white pants, white socks, red tie.  I put my hand for a long time on his quiet heart as if my heart had to register this stillness. Safe from the planning machine in the presence of the body, my usually not so emotive sister and I hugged and cried.  The body took us there.  Our Dad was dead. All of the ways we had silently leaned on this heart came forward:  creditors with open hands wanting tears.

And when we were done, we were done.

November 8  – Dressing Dad

Morticians who work behind closed doors had company today.    I wore purple latex gloves and chatted with Dan and his son as we dressed Dad in his final burial suit. I lifted the legs to pull up his pants, put on his socks, put his arms in his sleeves, buttoned his shirt for eternity, tied his maroon paisley tie. His grey suit, the one that he wore to church over and over, the one that he wore out to lunch after church with his friends. Their weird pride in sharing their art honored with an outsider, my inner bow to them. This is how we cut the back of the shirt. This is how we pull the arm through the sleeve.

When I lift the sheet, his thin hairless legs look short in his underwear. He looks so small. I register that this body that was part of my father is now a corpse. I hold the word corpse in my mouth like a marble while the tie is firmed up and the buttons buttoned, the body lifted into the casket by three men and straightened. These are the hands of my father. I hold them….all of the memories of taking them. The knowledge of his love is still strangely in this tissue. How did it get there? I take comfort in this holding of them, in kissing his bald head. This was the body of my father, the one he has left, is leaving. Something of him is still here, but less than yesterday, less still after being placed in the casket. Today he is more severe and distant.

Dan shows me how they replace the color in the face with a jar full of red paste and a thick brush, he strokes Dad’s face lightly giving him a pinkness back. He removes the incrustations from his eyes, the ones that looked to me like tears, with a pincher and gauze, sprays him with powder and brushes again. Voila. Complete. Fini. QED.

When we are done and after the door closes I sit alone with the body that was my father’s. Just sit with it. Later I talk, to what I don’t know. To the body and to what is no longer the body. I speak my peace and say my apologies. I say my Amen, then leave alone by the giant front door of an empty old house into twilight air and city.

Later the family sitting around the dinner table talking. The stark domination of my brother’s voice. The widow’s exhaustion in Betty.  I sit without speaking, wondering. What is it exactly that I know that I didn’t know before?

November 9 – The Visitation

The kids arrive with Nick from New York in the morning. A scramble for suits and ties. Later I arrange things I find in the basement in the visitation room. Rummaging through back closets.   Dad’s 4H journals that include maps of his farm and notes about drainage, a pile of blue ribbons from county fairs, a leather cigarette holder from Africa, pictures of him waving his straw hat in cornfields, standing by a prize cow as an adolescent, the dashing picture of him in his Navy dress blues, both just after enlisting and as a Chief Pharmacist Mate at the end. Cocky and dapper. Ready to meet his life. A cast iron apple peeler from his farm in Iowa, wedding picture, a picture of him in the apple orchards where he was testing new varieties. A picture of him with my brother as a child. I arrange these throughout the room so people can be surprised by something. Even though I have been warned that no one will come, I can’t deny this small curation.

Visitation is from 4 – 7 p.m. No one shows for a long time. I sit alone and notice the body has changed dramatically in three days, his face now harder, more frozen. When I touch his arm there is no content. Yet while he does not seem very close, he feels familiar. The first person to come was a guy no one knew. He walked in, stood a moment in front of the casket, turned, shook our hands as if surprised that we were there and split in under 2 minutes. It reminded me of the drive-through bank a guy in the south turned into a funeral home, starting a whole new movement of drive by respects. Hit and run. How deep the fear.  But there is something about seeing the dead.  Even animals need to do it.

Later a few others filter in. Family, Nursery people. They pass, look a moment befuddled, sober or confused, laugh, pat or speak a word, then turn toward the living for conversation and laughter.  The grandchildren are comforted by time with each other and the stories.  During these hours, Dad’s body gradually feels more like an object to me, a prop in the room.  Empty now.  Nick and I sneak out for a walk and stop at a bar to raise a glass of beer to the Dad that he loved too. For a moment he finds me beautiful in the sunlight.  Though I feel old and exhausted, I allow it to be true.  All of these years. It is like in the old days as engineers together, just like when plans went out at project’s end.  Joined in grief.  Comrades.  Friends regardless.  To life.

November 11 – The Burial

It happened yesterday.  We buried him. The family gathered early and reflected together. When the casket was closed there was nothing I could sense of Dad in the body.  He was gone. The young Korean minister had a youth group event the morning of the burial.  So the zany new age, deathphilic healer/therapist (me) led spiritually defiant near atheists, and the traditional right-leaning Christians of my family at the graveside.  Swallowing hard, praying openly, singing Swing Low Sweet Chariot, lighting candles, spreading ashes and rose petals, managing embarrassment and their silent discomfort.  Meanwhile the  sense that the new convert to spirit (Dad) was enthusiastically cheering me on like a father of a child at the plate in her first ball game. Later, taking a turn a with my sisters speaking in front of the church about my Dad’s “other church”(the garden) and read Rumi’s “What have I ever lost by dying?”.    That evening I hold my Dad’s only great grandchild in my arms through a dinner party.  Astounded.  Exhaustion finally reaching me then.

We all look tired now.  But today, all day, the Dad within me was strangely exuberant,  Wanting me to know things, like that he got it.  That he was proud.  All of the things I waited for.  Maybe I just made that up. But that is how I saw and felt him. Excited like a kid.

December

After Mom died I realized that you don’t know your parents life until their story has an end.  Then you see them as a whole, a work complete, their wisdom settles deeper within your bones.  Her crazy wisdom came by degrees in the months and years after, in moments at the sink or in the garden.

Now it is even more clear. If you are open to looking and working the long ending, perhaps it is like finding the strange, unknown package without a tag under the Christmas tree, the gift at the heart of the mystery of birth. Perhaps one you wanted. Perhaps not.  What is bereavement if not the face-off with this gift?

My father, born July 5, burst forward to me like so many fireworks in joy after he died. Brimming joy. His relief to be out of the body and this joy has filled me for weeks.  Enthusiasm for me, my life, passion for the project of being human. Peace. I feel closer to him than I ever have, and more in awe of his gifts and heart. More grateful.  Strangely more whole.

Stories well written can end like this too.

This is just a reminder.

Jeanne Denney is a therapist, hospice worker and death educator in the Greater New York area. Her website is http://www.jeannedenney.com and email is jeannedenney@gmail.com.

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Obituary:

Hugh Robert (“Bob”) Denney, of Portland Oregon, formerly of Louisiana, Mo. died at home on November 5, 2012. The son of Homer C. and Myrtle Jefferson Denney, he was born on a farm near Redding, IA, on July 5, 1921. He attended church two weeks later and remained an active Methodist all his life. As a boy, he tilled fields with a horse-drawn cultivator, milked the family cows, and took classes in the same the one-room schoolhouse his father had attended. To complete high school he traveled to Mt. Ayr, IA, and boarded in a private home. He graduated in 1938 and enrolled at Iowa State University in 1940. There he pledged Acacia fraternity, waiting tables at the house to earn room and board. Later he said that he learned as much in the house as in the classroom. In 1942, he enlisted in the Navy and trained as a medical corpsman. He was posted to Boston in time to do ambulance duty the night of the Cocoanut Grove fire. Later, he served ashore in a hospital in Recife, Brazil, and aboard ships that took him to ports as distant as Pearl Harbor and Mers el Kebir. Discharged in 1946, he returned to Iowa State, graduating on June 12, 1948. He married the former Maxine Zihlmann eight days later. On July 1 he began work with the Iowa State extension service, soon becoming a county agent. In 1951, the couple moved to Nashua, IA, where they operated an orchard and began to raise a family. Ten years later they moved to Charles City, IA, where Bob became Vice President of Sherman’s Nurseries. They moved to Louisiana in 1966, when Bob became the head of the commercial sales department of Stark Brothers Nursery, a position from which he retired in 1985. All of Bob’s children are graduates of Louisiana High School, and many of the trees in Louisiana’s parks grew from saplings he planted when he headed the city’s park board. Bob was an active member of the American Association of Nurserymen throughout his career and Chairman of the National Horticultural Standards Committee from 1979-1987. In 1992 he and Maxine relocated to Portland, OR, to be near their son Jon and Portland Nursery, in which Jon and Bob had been partners since 1980. His sister Bernice Webster preceded him in death in 2012. He is survived by his children, Marjorie Hunt, Martha Denney, Jon Denney, and Jeanne Denney, by seven grandchildren, and by his wife Sylva Denney and her children.

On November 5, my 91 year old father died from Congestive Heart Failure and Pulmonary Fibrosis after 36 hard hours struggling for breath. The first calls that he was taking a bad turn came on Sunday morning. After talking with the hospice nurse, I decided to fly out on Tuesday morning to be with him. He died Monday night. I felt guilty and more than sad to miss my usual role in vigil, but was surprised by new ways I cared for him after death. I explore these in this blog and the next, as well as the help they gave me.

There are many silent experiences around death. This blog, based on journal entries, recounts one of them: a spiritual experience just after his death. In it, my father appears during meditation and we engage. This may seem preposterous to you, but I hope you will read with an open mind, leave a comment and stay tuned for the third and final installment.

Jeanne Denney

November 5, 2012

Dad told Leici yesterday that he only had 4 more days. He said the time was near. I will fly out tomorrow a.m. Yesterday, crying in Nick’s arms, knowing he is really going now. Last night at the end of group, Iris Dement randomly comes on the Ipod from shuffle singing “After you’ve gone” (a song she wrote to her dying father). I sob and the group holds me. It’s good for everyone that we do this.

November 6, 2012 – On the airplane to PDX

Last night around 9 or 9:30 Dad died at home in his bedroom that overlooks Portland. Mary, Ken and Betty were with him. I wasn’t. Instead, I did three unusual sessions, then drove home to pack for the morning flight.

I felt Dad all day. I knew he was dying. At home around 9 p.m. I stop packing with an urgent feeling that I should focus and pray for him, then that I should call and have someone put the phone to his ear just to tell him I love him. My call comes at the moment of his last breath. Mary, crying when she picks up the phone, saying “Oh Jeanne…he just…he just. Just as you called…” Betty had told him that she loved him. Ken and Mary were in the room. I notice that I didn’t feel sad for him, he was so well honored, well attended and surrounded with love, complete. I selfishly felt disappointed for me. This wasn’t how I had pictured it. I know better than this crazy thought, but I have it anyway. I should have gone yesterday, I should have gone today. My inner picture of me as self-appointed death guardian crumbles and an ill-defined promise to help seems broken. Was it broken? I should have known. Etc.

There is the flush of exhilaration that accompanies a new death. Later I ache like a mother who misses their child’s graduation or first day of school because of business. I do what anyone in this situation does, I give opinions and suggestions by phone. I ask Mary to keep his body as still as possible for as long as possible. “The morticians can wait”, I say. “Ask them if they can embalm him after I get there”. Thankfully, no resistance to my strange requests.

That night, sleeping is different. I feel newly skinless, unprotected. New world without father or mother. Nick feels this too. Things between us are distant and difficult for weeks, but now we cry and sleep together, admittedly little. At 5:30 a.m. we leave for the airport. Yesterday, the very day that Dad died, Teddy started to take down the old maple that’s been dying in the front yard for 10 years. How apt. Dad was nothing if not a man of trees, a nurseryman. Four trees worth of debris from Hurricane Sandy lay in the yard, war fallen, broadcasting mourning. Pulling out of the driveway. Dull light. Raw world. New treeless land without skin.

“Fancy finding you here”

Settled into my airplane seat after take-off I decide to meditate, the first chance to center  I have had.

I have practiced “finding” people who are dying or in comatose states for years in hospice work, occasionally people who have died. Finding them means seeing them in my mind’s eye. I don’t know how I do this.

When I close my eyes I quickly try to find Dad.  It takes no effort. I immediately see his face without a body floating in the black void midair to the left in my visual field. I rarely have a face so aggressively near. I am startled by it. It is a younger face, puzzled and blank, staring as if seeing me for the first time, which perhaps he is. I don’t expect this or know how to engage with it. I feel uncomfortable, weirdly afraid to look in his eyes.

For a few minutes I open my physical eyes and get busy with the world around me, ipod, notebook, shoes. I may be trying to make it go away. When I close them again it is still there, hovering in a black void. I see his eyes again, looking deeper. There is something kind of stultified, clutching and afraid in them. Is this my father newly dead? I hardly know how to meet him or whether to take this experience seriously, after all I am in an airplane. Something is called for, but what? Finally I do what I would do for any hospice patient. I place myself in the picture with him, put my arms around this face, talk to it, thank it, and reassure it. He gets smaller and seems to grow a body. Suddenly we are standing together in this black void, the same size. This is all something like Alice in Wonderland.

I remembered once just after a heart surgery at 85 Dad told of waking in ICU from what sounded to me like a scarier type of Near Death Experience (NDE). “I couldn’t see light or hear sound, I called but no one answered. I thought that I had died but no one was there.” he said, tearing up. I could see him asking “Is that what death is going to be like?”. No wonder he didn’t want to talk about dying. The place I found Dad now was much like this. He seemed lost in a void. Not an evil void, just an empty, dark one as if stuck or disoriented in a tunnel he could not get through.

To say that Dad wasn’t much for the metaphysical is an understatement. He was a fiercely pragmatic Methodist. Church made my mother happy and was “a good social institution”. He served on budget committees, flirted at the coffee hour, went to the men’s breakfast’s and sang in baritone but was not quite a believer. Something in the spiritual stuff irritated him. If he had a prayer life other than the perfunctory family dinner prayer or the care he gave plants in the garden I never knew about it. He was a man of business with many friends in body, not so many in spirit. Dad’s views on the other side?: “A bird in the hand is better than two in the bush”. This void was not his terrain. So when I showed up….well, let’s just say it was possible (if you believe any of this) that I was a sight for sore eyes. He clung to me with kind of a “What took you so long?” look.

Dear reader if this seems a bit unhinged from your reality, I understand, but consider that there are many ways of seeing and knowing. Death challenges us to use new ones. I learned this way sitting with non-communicative hospice patients with closed eyes. I did not know what they were aware of or if they wanted me to be there, but searched for clues for how to engage or comfort. As I did this images arose in my visual field. I just watched them. This one sitting in a field of daisies, picking them. That one struggling hard to get up a steep hill in concrete shoes. Another standing before the ocean gazing outward. Another looking hard for something in a field of grass. They were symbolic and highly specific. I most often saw myself interacting and finding ways to help.

In sum, I’ve had enough strange experiences and confirming coincidences to respect these pictures. I interact with them in interesting ways; at the same time they have a trajectory and movement of their own. In other words I don’t create them with my mind. I am observer and participant, not creator. I learned that if I look, there is almost always a source of light, a destination, or something to turn toward. If there isn’t, there is a process being intently focused on. I am usually there to help in some way….chiseling off the concrete shoes, for example, or pointing them in a different direction. I might have a conversation, bring encouragement, give new ideas, listen. I am a companion.

Where two worlds meet

There were two immediate problems with finding Dad here. First, I wasn’t used to a father having a spiritual form. I carefully hid spirituality from my family, and suffered the angst of them not understanding this weird, black sheep part of me. Not only didn’t Dad understand my spiritual explorations, he didn’t get my profession as therapist, my research, writing or interest in death (“what is it that you do again?” “And people pay you for that?” “But what do you actually DO?” “What is this Hospice thing again?” etc). He tried. You have to give him credit. I had fantasized that by supporting his dying he would finally get it. This wasn’t what I imagined.

When I got through first minutes of discomfort, I got that he needed help, which brought about the second problem. He was disoriented. I naturally tried to turn him toward the point of light in the distance which I could see but apparently he could not. However, his eyes were so rigidly fixed on me I could not convince him to look away. I needed help. Remembering Dad was a social animal I finally said…”Dad, it is time you met my friends…” I am not hugely social in ordinary life, but in places like this it is different. I invited a troupe of spiritual benefactors to come and come they did, big beautiful, radiant beings. “Welcome to my world Dad. Let me introduce you …”

There was a wonderfully surreal and comical aspect to this vision. Dad was a party thrower into his 90’s. In life, I would have loved Dad to be at my parties (supposing I threw them) or to introduce him to impressive friends (if I had any) because my life would become visible and worthy of his interest. I would appear on his map. I was a loved part of his life but he was strangely absent in mine. I knew his friends, he didn’t know mine. Not being visible or having parents actually in my life felt normal, but was a long-suppressed sorrow. Here it was as if I was introducing him to Ronald Reagan, Bing Crosby, Betty Grable, Babe Ruth and Hank Williams all at once as friends. His shock of new understanding. My embarrassment. I saw myself negotiating his care, “Give him anything he needs and charge it to my account” (my account?! what account? I am thinking). They dressed him in a new gold robe, placed something crown-like on his head and off he went with them. He looked beautiful, relieved, excited, grateful as he started off toward the point of light on the horizon. Tired from the concentration, I took a break, stumbled over the lady next to me to get to the airplane bathroom.

A note here on what it means to see and communicate in this void space. It is not exactly like you hear words. You just receive thoughts in download. I see and watch the “me” in these pictures with detachment and curiosity as if watching TV.

I have no idea how time works in this place, but back in my seat I check back in and see him still walking away with the radiant others. This seems wrong so I jump back in to catch up with them. As we walk we chat. “Dad, your obit turned out really well.” (he had been worried about that), “We’ll have a good party for you, don’t worry.” “Remember how much love you have left behind. We are so grateful.” We walked toward the doorway growing ever larger and brighter. I made a quick proposal: “Dad, maybe we could work together more now, kind of business partners of spirit like you and Ken.” (Dad and my brother were business partners. I thought he would like this idea). At the rim of the opening: his parents, my Mom and her parents, Aunt Bernice and others peering out. Radiant. He seems amazed.

Reunion.

Our tearful parting there lasted awhile. I said that I had to go back, but we would be together and find ways to be in touch. I told him that he would probably have things to do, but when he was done to find me in my dreams. I can’t say how I knew to say these things. “We can be in touch that way or we can talk through the trees.” I seemed to be explaining things of both my life and this world to him, things even I could not understand. I could only tell that he was elated, understanding me in the dawn of new respect. I encouraged him to not be afraid of spirit, to walk into this new/old world just as he walked into a new spring season after winter. I returned then, but not before a few tears with them. How hard to return.

Then it was dark and complete behind my eyelids. Dad was gone.

Post Script

Was this wish fulfillment, Psychosis, projection, fantasy? Hallucination, delusions of grandeur, dissociation, menopausal ungluing? I can hear the voices of psychoanalysis saying that my psyche made this up to defend against guilt for not being with him at death. I can’t know. There is little confirmation for these experiences in normal awareness, but occasionally some. For example, once  I “found” a patient on a ferryboat clutching a pier so that it could not depart, this after weeks of helping her “walk up a steep hill” in a series of hospice visits. I handed her a bouquet of flowers so she could let go. Moments later she took her last breath. There are other stories like this.  In the case of Dad I had only three pieces of evidence: the story from the ICU, my tears and the fact that I felt different, happier even elated, stronger and more resolved. I felt I had helped Dad just as significantly as if I were by his bedside, maybe moreso. I lightened. I didn’t regret not being with him as much and could appreciate that my siblings had had new experiences that were right for them. They might have avoided these if I had been there.

Where do these images come from? It is hard to know. People “see” the unseen in unique ways. My job is simply to report that shamanic sight experiences like these occur. And, in this case, allowing it helped me feel I had fulfilled a holy compact, healed an old sorrow, been known, even finally celebrated somehow. I felt more myself and had less pain. Would Dad have found his way without me? Most likely (Experts report that 1-15% of NDE’s are of this type but usually resolve in time to a more typical NDE). It just might have been a lonelier, scarier trip.

As the plane landed through the morning fog I remembered that it was election day. An enduring legacy of Dad’s death is that it kept me from voting for Obama’s second term while he managed to vote against him before he died. “Very clever Dad! You won that one.” I’m chuckling. The last of our little jokes.  For now.

So we begin inventing all the new ways of finding, helping and knowing each other.

Jeanne Denney is a therapist, hospice worker and death educator in the Greater New York area. Her website is http://www.jeannedenney.com and email is jeannedenney@gmail.com.

The Kairos Network Blog was nearly dormant in 2012. The reason? Well, my own father’s decline and death in November. The entire year for me was one of endings and closure. As my father declined, my children approached the rim of a much more empty nest, my marriage began to permanently change, I went through some depression, menopause wrote its final chapters in my body: my hair grew more grey, my eyesight dwindled and I got the first hints of a double chin. It was nearly impossible to distinguish these events in lived experience. Our inner lives and processes get intertwined with our parent’s physical death. How do we make meaning within the totality of our still unfolding lives? In support of that question I share highlights from my recent journals in the next three blogs. Part 1 below. Last two to follow. Check them out too if you dare.

Part 1: Journal notes from my last visit with Dad and return home.

Part 2: My post-death meditation encounters with my father.

Part 3: An account of dressing my father’s body at the funeral home and burial.

Dedicated to my father: Hugh Robert Denney

by Jeanne Denney

October 15

Dad is sleepy and non-communicative most of the day. In another world. Not so interested in things or news. Meanwhile I have a day of sadness and depression, weeping in contrived trips to the bathrooms or bedroom. From here my life looks small, failed and illogical. I become aware of the difficulty of it and how I look to them. We manage to go to Apple tasting for an hour with the wheelchair (this is an event at the family retail nursery). I breathe with effort trying not to remember home.

Later I shop and cook dinner for Dad and Betty. I simply enjoy them with clear knowledge that it is ending. Dad comes to the fully set dinner table to eat his soup. He moves with greater difficulty than my last visit and ceremonially slow in his jeans with the pressed crease. He focuses hard to get the noodles in his mouth so that he can barely listen to the talk, while Betty with round shoulders politely asks questions about work and children. Folded napkins, butter and salt. Everything just as it should be. The touching and implicit pride in this. It is if we are laboring not to break impossibly thin porcelain tea cups. While we eat my feelings range wildly: I can’t possibly live this way and I wish I could live this way. I am ashamed of my crazy, chaotic life and I am proud of it. I hate New York and the East, and I can’t wait to get back to it. Two things always true. Which means, as usual, that my heart is both open and closed. That I am afraid to feel all that is here to be felt. How much I want it to stay just as it is in this moment.

October 16

Dad sleeps all morning. He asks no questions until tonight when he just asks: “Things going ok for you?“ I say “Well enough”. Unlike any other visit of my life, that is all he asks and all I say. We collude to avoid the deeper questions. Don’t ask, don’t tell. What he doesn’t want to know and I don’t want to say?: That I am suffering with depression and lost in life. My marriage is coming to an ill-defined ending and no one can see the future. That he is dying.

Dad in his chair gazes behind me at the window. “What are you thinking Dad?” “Nothing”, he says like a zen sage, “Absolutely nothing”. What a relief.

October 17, 2012

Much progress today. We work on estate stuff. I arrange for a bath aide to help with dressing and showers. Cooking, shopping, lists of things like insurance policies, the lifeline replacement. Later respite in my father’s garden after the storm and wind. Small stems broken on the large heads of dahlias full of water, sunken to the ground. The candidates debate as I make bouquets out of dahlias and roses. Then the blaring Fox news spin. Dad for the first time is disinterested. The President looks old, not like someone who is going to confidently win, like someone just out of a foxhole. Like Lincoln in the middle of the civil war, heart heavy. Heartbroken. The sorrow of being human swallows me as I arrange the wet, broken flowers. I put them everywhere, on tables, counters, on either side of the TV.

Dad dozes next to me. He still gets up for the bathroom but has been having accidents on his way for several days. We aren’t sure when to challenge his independence. Later I ask him again what he is thinking as he gazes out the window again. “Oh?….(long pause) Life is good.” He says. “Life is very good.”

October 18, 2012

On plane at the end of another hard day. Long. Today the men of businesscame: the accountant and the lawyer, my brother. We cornered him in his recliner. He is declining faster now and the checks needed to be written. The obvious and unspoken reason is that he is dying. It is time. He was confused at times. He understood, but it took time. He knew he wanted to do this some day but kept forgetting. He wrote them for the wrong amount at first. His hand trembled. He was so proud of his money. He struggled to keep the pen in his hand. But in the end just said graciously “It is no problem. I don’t need it.” As he let it go he lightened. We took our checks and said thanks. It felt like an accomplishment, but somehow a weird, not so proud one.

Betty drives me to the airport for the red eye east. Dad gets up from his chair to hug me goodbye. The goodbye is poignant but not remarkable. It is just like it always is. I don’t think “Oh…the last goodbye.” I just think: “This is the father who has always loved me, who has always hugged me and told me this”. This love, this staple of my life…I notice that I don’t think it is going anywhere.

October 19
It was wonderful to be met by Nick at the airport. I am startled seeing him standing outside of security in a suit at 5:30 a.m., touched that he parked the car. We tear seeing each other like long separated siblings or neighbors after a hurricane, the eruption of gratitude can’t be explained. What do I do with this old and real love? Yet it has to change, is changing, is partly over. He sometimes blames himself as if the workaholism that has plagued our union could have been different. We talk and joke all the way to his office, sharing war stories before I drop him off and he disappears into the revolving doors of the office building on Park Avenue.

October 20
Back from Portland I find myself at home in a garden so unlike my father’s. Mine in midlife ironically an essay on failures, his garden at 91 a burgeoning collection of abundance, color and grace. Largeness and bounty. Roses still overwhelm his front walks reaching up to the eaves of the house to bloom their last. Large tea roses mainly in pinks, oranges, whites and yellows. It reminds me of my mother’s house after she died which had so much residual order that it stayed in place for years after. My father’s gardens astound me with his love and perfection, administered through high quality soil, chemicals and the old horticulturist’s expertise with roots honed over 80 years of gardening. Wherever he lived there were gardens, his places of prayer and respite. Him coming in from the garden whistling or singing with armloads of broccoli, kohlrabi or flowers saying “Look Mother, here. For you.” She greeted them with delight or dismay. Late in life more dismay, more mess in her perfect house. She would have to can, freeze, arrange or clean up after them.

This season Dad directed the gardener from his command post at the recliner, pointing with his cane and giving orders in bad Spanish. In the front of his house in October were still rows of copious peppers, red and green. Huge red and orange begonias burgeoning out of their planter boxes. The things he throws in the compost as dead would look good in my garden. In my yard: things hanging by a thread.

Writing this evokes deep sorrow. My failures as a caregiver swarm like a pestilence of flies. What was not received in the family: that is where I staked my flag. I therefore suffered. And suffer we have this summer and fall. The marriage cannot go forward, it can’t seem to end and it cannot return. We are crawling to the finish line of parenting bloodied and raw as war buddies. You will not be reminded of my parent’s well tended house and gardens here. We are in pestilence and drought of spirit.

As if to help make this completely clear, the deer ate every flower that bloomed this year. Black mildews and white mildews erupted variously. There are gangly arms of petunia without flowers and overgrown butterfly bushes, a garden full of weeds, beds full of weeds, a long row of hostas mowed to nubs by deer, dry vertical stalks everywhere, signs of our undoing. I read them all as signposts of the failure to thrive. When I returned home from my last trip to Portland there was an invasion of every kind of fruit flies, black flies, all circling themselves the kitchen. Garbage overflowing. Cats fighting, stressed and peeing everywhere including the bathtubs sensing Paradise lost. This cacophony sets an alarm of anxiety through my system. It is still muffled, rhythmically moaning as if under a pile of laundry waiting to be discovered. It says “Things are not well”.

I remember this poem by Machado that Bly talks about all the time…

The wind, one brilliant day, called
to my soul with an odor of jasmine.

“In return for the odor of my jasmine,
I’d like all the odor of your roses.”

“I have no roses; all the flowers
in my garden are dead.”

“Well then, I’ll take the withered petals
and the yellow leaves and the waters of the fountain.”

The wind left. And I wept. And I said
“What have you done with the garden that was entrusted to you ?”

______________

Where did my embarrassing disarray or my parent’s intense order come from? Theirs wasn’t healthy, but it was something. My life isn’t healthy either, just 5/8″ closer to a weird truth of being human. Still… who wants to live here? My marriage is failing, or…maybe it isn’t. Maybe it is blossoming into its own beautiful death, that death a process full of embarrassment and riches.

Dad has numerous accidents in the bathroom a day now and forgets what everything you just told him five times. Still, he looks more peaceful than he ever has. He is no longer cursing Obama or interested in the election. He is not attached to his money or the judgments of people he had all his life. He is blithe and grateful. He takes in the sun saying “It is so nice to have you here.” He reaches for my hand. How the mess and the release from all that we don’t need any more go together. Uncoupling things is a wild metamorphosis bringing you to the root of being, the place of pens and hives and bees. The place of honey and ink.

Dear father fading. You have taken your turn into the land of the white birds, your turn toward Canaan. He is in a boat now heading to sea relatively happy. If he is sad, he is not expressing it. Who would have thought this liberation, coming as it does with its dropped spoons and soiled clothes, would be so complete? Yesterday he was reading grocery store fliers. A month ago he would have been too proud, now he isn’t. Which opens the door to me owning my gardens, overgrown, gangly, dry, weedstricken, and poor. Poor gardens still hold something dying but real. Something waking. Something bringing its essence forward to fail in exuberance but to succeed in heart, in humble trying.

Here in this sunlight of failure I put my flag, hoping one day for tall, tall roses and the delights of wealth and the deeper order that falls from the skies and rises from the earth naturally.

Jeanne Denney is a therapist, hospice worker and death educator in the Greater New York area. Her website is http://www.jeannedenney.com and email is jeannedenney@gmail.com.

If you are a friend of Jeanne, don’t worry, the depression described here passed. It is presented as just part of the elaborate dance of death.

By Jeanne Denney

The following article was recently published in The Forum, Journal of the American Death Education Counsel (ADEC) (Vol. 38, Issue 1 January 2012) and is reproduced here with their permission. In it I share some of my own current struggles as a family caregiver.

As a hospice worker, counselor and death educator, I am no stranger to death. People in my community consider me a resource for support as they timidly approach their mortality questions or are hurled headlong into them by bodies and life events. It is fair to say that I am one. I regularly sit at bedsides and guide discussions on topics ranging from DNRs to green burial, from grief to NDEs, from hospice to headstones, from death anxiety to conscious dying. But this year, as my 90-year-old father’s heart and lungs began more obviously failing and my 61-year-old sister suddenly began a fight for her life from a rare and aggressive form of cancer, I got a sharp reminder that community identity does not necessarily translate to distant fam¬ily. While dealing with my own family, experience with death and illness has been more detraction than asset. Knowing what I know without active participation in care is stressful.

Long-distance caregivers have lots of special problems. I am faced with many of the usual: anticipatory grief, desire to be involved, guilt that I can’t be, overcompensation for guilt, worry about care, travel difficulty, loss of family from my regular life, frustration with communication. All this unfolds while I work through life review and relationship closure on my own. But there have also been unexpected struggles: family members’ startling independence and reconsignment to a historic family role, in my case “the baby,” and second family. Although most families struggle with too few hands and eyes for care at a distance, it is also common to find family members like me who want to participate in care but, for one reason or another, lack opportunity. Old patterns in family systems can add pain to guilt about absence and, in my case, to a hospice worker’s knowledge of what is to come. In this care story, my issues with being a somewhat marginal “second family” comingle with distance and fierce family autonomy to frustrate finding a role in care. It is a perfect setup for grief, anticipatory and disenfranchised at once (Doka, 1989).

Oregon
My father lives 3,000 miles from me on the cheerful west coast. I live in New York. Like many people, my Dad’s chief strategy for avoiding death has been to deny it: “Don’t let the bastards get you down.” Hey, who’s complaining? At 90, on oxygen with CHF and pulmonary fibrosis, he is entertaining, mentally competent and social. He loves showing up at parties, amazing people with his stamina and humor. Dad has been remarried for five years. Both he and his lovely 80-year-old godsend of a wife, Betty, present as overly wonderful specimens of aging. I visit him every few months for a few days, as long as I can without losing income. The rest of what I offer is by phone. Betty is a strong advocate of presenting the positive and gives me spritely hellos on the telephone. “Oh, we are just doing great! Your father is just coming in from the garden, would you like to speak with him?” “How are you, Betty?” “I am great, just getting your father his breakfast.” Overseeing a large house, holding the center of an extended family and caring for my father, she is generally too busy to talk. The edge in her voice under the cheerfulness sometimes betrays fatigue. Unfortunately I know about the toll of care on caregivers (Fleming, 2003). I also know that long-distance family’s opinions can feel meddlesome to caregivers on the ground.

The roles for Dad’s daughters at a distance are different than for our local brother and step-sisters. We don’t pop in for coffee, struggle over the politics of dinners or dog-sitting. I come, stay for a few days, eat, talk, make a few careful suggestions, try to help with this or that and then leave again. In short, I am company. My desire and intent is always to give respite and participate in care. But though help isn’t outright rejected, it isn’t, well…so welcome. Instead, at 51, my family-appointed job is to be my father’s sweet little girl. “Just relax, you have such a demanding life out there in New York. We just want you to rest.” When we come, Betty cooks and hosts big family dinners, then collapses from fatigue after our departure. We challenge this status quo, but it usually adds more stress than playing along. As a result I am cautious about visiting at all. Meanwhile, on my end, nothing could be more uncomfortable than not participating in Dad’s care. Nor, frankly, does anything hit a nerve much faster than being re-conscribed to “sweet little girl” status in the prime of life. Something like the family pet, I was valued but not quite considered a real in the family.

My father gets on the phone. “Hello, gorgeous,” he says with as much enthusiasm as he can muster, “How is the love of my life?” He tells me that he has had a few great days, but was short of breath this morning. We talk about blood pressure, hydration, taxes and as many other details of his life as he remembers. We don’t talk of the agonizing episodes at night when he has chest pains, can’t breathe, doesn’t want to wake Betty, and doesn’t know who to call. I track my nagging feeling that they should have support for these more and more frequent occurrences. They should (by my standards). I know that with an in-home palliative care program, he will live longer and better (Goodlin, 2009; Beckelman, Hutt, Masoudi, Kutner, & Rumsfeld, 2008). But for them, this means giving in to illness, changing their newly made life together and acknowledging coming debility. Sometimes I tell Dad about hospice work and make suggestions. These uncomfortable conversations by phone usually feel like pushing through granite. He doesn’t understand hospice or palliative care. He doesn’t want to die or talk about it. He doesn’t want help or information. Meanwhile, I quietly ruminate that someone should be monitoring his oxygen and medications and helping with things like sleep and bowels. Betty, a diabetic, has given herself single-mindedly to his care for five years. I’m concerned about her health too and the energy my father’s care exacts. Is she really ok? Is he? By whose standards will I evaluate? So it is that we all work our anticipatory grief, trying to complete our stories as we might wish to have them.

Missouri
One thousand miles away, I offer what support I can by phone to my sister with cancer. A PhD in molecular biology, Mary has a brilliant mind for medical science that amazes the doctors treating her for a rare cancer of the blood vessels. They treat her like a colleague when discussing her case, which is at times a problem. For a left-brain scientist, Mary is receptive to talking with me about the psycho-spiritual aspects of my work with cancer. Still, I am conscious of the limits to what I can offer as a younger sister. I am vulnerable to remarks that take me back to feeling five again. Most of my “care” involves balancing a desire to share experience that might be useful with personal emotions and deceptively difficult detachment in the face of her illness.

I call my brother-in-law to check on Mary. She has had a particularly bad response to chemo that has landed her in the hospital with next to no immune system for a few days. Four months into their ordeal, her devoted husband sounds a bit shaken and drained. My husband, stopping in on a business trip, reports that the refrigerator is a bit spare; they might benefit from someone around to empty the dishwasher and just be around for cooking and emotional support. Feeling a little helpless, I send an article on support for care-giving and offer to come out for a few days. Often people look for support for when they are sickest. My sister looks at the chemo schedule to see when she might feel good enough for me to come. My brother-in-law, meanwhile, takes mild offense at my awkward gestures: “Just come to visit and be a sister,” he says reproachfully, “I don’t need help….and you have a busy life.” Perhaps because being the family inept wasn’t great fun, I find the “just visit” program hard to embrace. I don’t yet know what it means to be a sister without emptying the dishwasher, bringing tea or cooking a meal. I buy a plane ticket to find out and plan to do my best to be present and un-heroic, “just a sister,” without being a burden.

How complex it is. How tightly we clutch what seems precious: family roles, identities, our personal heroism, all that we’ve known. How impotent I feel. My sister’s brilliant rational mind, her sense that she has to take care of me and fear of receiving help won’t change this week or next. What my father wants most from me is not help to the bathroom, cooking or discussions about his care or the future. He wants to be received and admired for how well he is doing it. Admiring him (my job in the family) shores his identity even as it sometimes burdens mine. For now, though, it is apparently my only way of helping.

Meanwhile, I struggle to disable the narcissistic helper within, she who avoids helplessness and sorrow by being really needed. This family-honed strategy is harder to resist than ever. Still, maybe the clumsy ways I hang in for family, failures and all, is occasionally, unconsciously and by some miracle “a help,” whatever help really is (Dass & Goreman, 1985). Maybe showing up to awkwardly fail is love, even and especially while touching the familiar feelings of being a disenfranchised youngest child. I remind myself that this isn’t my ride. They are just fine. If my father dies in the night without an on-call nurse, calls 911 and ends up on a vent, or if my sister’s refrigerator is empty and the sink is full, well…they’ve done it their way. I have supported the dignity of their independence. But let’s be clear. Detachment mastered with others isn’t easy with our own families. We are so a part of the play.

Players on a human journey of grieving and loss, hospice workers or not, it is hard for us not to long for the unlikely happy ending to childhood sorrows at the end of a parent’s life. This experience is surely intensified by distance. I can’t help wishing someone would ask me to be just a little heroic and say “We need you. Can you come?,” “Could you do dinner?” or “Could you start some laundry?” Crazy, but given my history, I envy people healing old wounds by feeding their parent pureed foods three times daily. It is unlikely that I will have that opportunity. But like them, I sit vigil for the opening.

References

Beckelman, D., Hutt, E., Masoudi, F.A., Kutner, J.S., & Rumsfeld, J.S. (2008). Defining the role of palliative care in
older adults with heart failure. International Journal of Cardiology, 125 (2), 183-190.
Dass, R., & Goreman, P. (1985). How can I help? Stories and reflections on service. New York: Knopf.
Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lanham, MD: Lexington Books.
Fleming, D. (2003). The burden of caregiving at the end of life. Missouri Medicine, 100 (1), 80-84.
Goodlin, S. (2009). Palliative care in congestive heart failure. Journal of the American College of Cardiology, 54 (5),
386-396.
Morris, V. (2004). How to care for aging parents. New York: Workman Publishing Company.
Okun, B. & Nowinski, J. (2001). Saying goodbye: How families can find renewal through loss. New York: Berkley
Hardcover.
Rolland, J. (1994). Families, illness and disability: An integrative approach. New York: Basic Books.
Smith, C. (2006). Engaging the emotional, financial, and physical ramifications of long-distance caregiving. Home Health
Care Management & Practice, 18(6), 463-466.

About the Author
Jeanne Denney, MA, is a hospice worker and body psychotherapist in and around New York City. She offers death education in her community and teaches Death and Dying at Ramapo College of New Jersey. She has also served as Spiritual Care Coordinator for United Hospice of Rockland. E-mail: jdenney@email.com.

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.

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.

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.

shell with pearl

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 http://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.

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 http://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.