Dressing Dad: A Daughter’s Post-Mortem Reflection on Dying Part 3 of 3

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.

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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.rocklandmindbody.com and email is jeannedenney@gmail.com.

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.

Dressing Dad: A Daughter’s Post-Mortem Reflections on Dying Part 2 of 3

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.rocklandmindbody.com and email is jeannedenney@gmail.com.

Dressing Dad: A Daughter’s Post-Mortem Reflection on Dying Part 1 of 3.

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.rocklandmindbody.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.

“Thanks, we’re doing just fine”: A Disenfrachised Caregiver’s Lament

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.

Teaching Death to Youth: Toward a Culture of Death Literacy

byJeanne Denney

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

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

What I learned

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

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

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

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

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

Facing the Reaper

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

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

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

Most students:

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

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

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

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

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

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

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

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

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

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

Your well wishes for their guide are most appreciated.

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

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

Douglas Firs Were Our Sanctuary: Remembering an Assisted Death

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

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

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

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

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

A Conversation
May 2, 2009

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

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

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

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

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

Andreya: Well, there are decisions.

Beth: Can you say some more about the decisions?

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

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

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

Andreya: Like?

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

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

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

Andreya: The best I could be.

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

Andreya: The people have to be ready.

Beth: And the place—what about the setting?

Andreya: It should be peaceful.

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

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

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

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

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

Andreya: So how do you know when?

Beth: You’ll know.

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

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

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

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

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

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

Andreya: That’s very helpful.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Beth: Tell me about that, can you?

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

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

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

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

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

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

Andreya: Sure.

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

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

Beth: That’s an option…

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

Andreya: I wish you could see the sparkles.

Beth: Me too!

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

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

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

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

Andreya. Yes, actually more connection.

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

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

Beth: Yes, that would be good.

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

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

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

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

Beth: Where do you want her to be?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

by Jeanne Denney

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

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

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

Honoring Resilience, but… for how long?

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

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

What it Looks Like

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

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

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

When is enough, enough?

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

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

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

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

By Jeanne Denney

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

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

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

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

Sitting with Nellie

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

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

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

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

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

Dying for Change

By Charles Leadbeater

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

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

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

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

The sad truth

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

Another way to go….

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

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

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

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

The First Patient: A Hospice Worker’s Chronicle

By Jeanne Denney

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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