Long Term Care: Making a Connection

by Fran Harmeyer

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

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

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

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

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

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

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

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

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

Sitting with Sally: My first Vigil

By Charlie Izzo

The hard work of reflecting on our own experiences at the bedside of dying others is an often neglected one for hospice workers. Making a place to tell our stories, for process and support was one of the ideas I had in starting Kairos. I have encouraged network members to share there stories here. Here is one from hospice worker Charlie Izzo telling the story of his first vigil assignment. – Jeanne Denney

I had tried on a few hats at the hospice where I volunteer: direct and palliative care, fund-raising , community outreach, memorial service and activities. Now the vigil care training was over, I was about take another, deeper risk as a vigil volunteer. It was a little scary. I have had a close relationship with death over recent decades. My wife of 20 years died in `92, my dad in `88, my father-in-law in `96, among many others. There is a sense of fear, awe and learning, as well as adventure, joy and laughter about it all. When I am with people dying I have often felt that the Universe was letting me in on something only a few had access to.

My first vigil care client, Sally, was an 86 year old woman who had a 92 year old husband was in another nearby hospital. Her feeding tubes had been removed, her IV stopped the day before, and her family had signed an order not to resuscitate (or DNR). I was also told I might meet her daughter and another family member, who had been sitting a long vigil for many hours over many days. “A respite is needed.”

In all Hospice assignments, there`s always a sense of a higher calling. I feel fearful, yet there is something magnetic I could describe it as a force, just above my head, causing me to be pulled upward somehow, a feeling of weightlessness in my stomach also. Having had taken many risks in my life, I reluctantly drug my fear behind me and took the job and headed to the third floor of the local hospital to see Sally later that day. I stopped to check in briefly at the nurses’ station at around 5:00 p.m. The nurse looked relieved. “It`s great you are here, she is at the end, her family needs a break.” It was obvious Sally was dying.

Down the hall two middle aged women hovered around the only bed in the room close to the only window. Glancing out the window I was conscious of the clear, crisp night outside. As I entered the room I introduced myself to Sally`s daughter Emily and her cousin Terry. At first there they seemed surprised and uncomfortable. After we talked a moment, a look of relief came over them. They had been there for days and couldn`t pull themselves away. Sally was lying still, eyes closed, mouth open, with soft sounds coming from her throat. Emily introduced me to her, telling her why I was visiting, and where I was from. Emily and Terry seemed to have a hard time leaving. They fussed with little things, telling me what to do in case she died while they were gone. They told me about the previous days how a Rabbi visited, as well as the other children and grandchildren. They asked about how I got into this work and we talked about my own grief and recovery work. I also talked to them about a sense of duty to be of service, to “show up.” It was clear that they didn`t want to leave, and it was nearly 6:00 before they appeared satisfied that it was safe to leave Sally with me. “We`ll be back at 8,” Emily reassured Sally. Emily seemed to know her Mom could understand.

When Emily and Terry finally said their goodbyes, I pulled up a chair next to the bedside, opposite the window. I was conscious of how small the bed looked in the large room. “Hi Sally, I`m Charlie from Hospice. I`ll be here for awhile with you.” Quiet at last, I put my hand on top of Sally`s hand. A very special space immediately opened up. Into it I felt Sally`s spirit right there, just above her chest and head, smiling. There is a kind of knowing in this state, an acknowledgement as two souls nod invisibly to each other. I sensed Sally was waiting for her family to leave. “It`s OK to die now if you choose, your work here is finished, Emily and Terry are away. It is a perfect opportunity to leave, it`s just you and I and this is why I`m here.” As I waited, I said some silent prayers to myself, sensing something was happening. I knew because my chest and face were full, flush, tingling with a sense of openness I have experienced before at the deathbed of others. It is rare to look through this window into death. It is a seeing that is not with the eyes so much as with the body. When I glanced at the time it was just 6:08 PM. Sally was dead.

I sat for another 15 minutes and prayed silently. The floor was unusually quiet for a hospital. In that space it felt like a gift, or a pearl, had just been given to me. As I got up to leave, communication with Sally seemed to have transformed, as if she came along with me and we were now companions. There was a sense of joy about it. I stopped at the nurses’ station to report Sally`s death. The nurse looked at me with both gravity and lightness, “You`ve done your job. I will contact the family.” She, too, seemed to have had been given access to that Universal window.

When I got to the parking lot, it was still crisp and the sky very clear. I spent a few minutes looking up at the 3rd fl window, the brick siding, and the sky, visualizing Sally`s path of departure. Sally seemed to be there bigger than before, and as if she were a few hundred feet above, looking at me smiling up toward her. It was reminiscent of the other deaths, my wife`s particularly. I could see further somehow, unsure what I was looking at, something like a child seeing a larger world. It was as if we were co-conspirators in rebellion against the idea that dying is bad. And we had done it together.

Though it was obvious in hindsight, it was the next day before I realized that Sally needed her family to leave before she could die. Sally and I were the only ones who knew it was my first time out at a vigil. A very special vigil it was. What A Gift

Charlie Izzo is a hospice worker and volunteer in the children’s bereavement program at United Hospice of Rockland. He is also a Real Estate Agent in Rockland County, New York and father of two.

Reviewing the Costs and Benefits of Compassion

by Jeanne Denney

A few years ago I did something crazy. At least some people thought so. I did a research project in which I had hospice volunteers simply sit with non-communicative hospice patients in self-defined states of compassionate presence. While they did that I measured both patient and “sitters” Heart Rate Variability (or HRV) using a biofeedback technology developed by the Heartmath Institute.

I had always felt that I developed relationship with non-communicative patients and that they responsed to my presence. Further, that patients in this state, far from insensitive, were actually accutely sensitive to people in their surroundings. I thought using Heartmath would be an interesting way to probe the vast abyss of silence at bedside of dying patients, a place I had come to know well as a vigil sitter and hospice worker to people in comatose states. The Heartmath Institute has done some intriguing research that shows a relationship between emotions and HRV. In addition, their research suggests that one person’s HRV (a measure of emotional state and well-being) influences another’s simply by being in proximity (something I think that we have all checked out experientially).

There was much that came out of that little research project (if any of you are interested in it you can read an article here (p. 11), and the full text on the Heartmath website itself The Effects of Compassionate Presence). There seemed to be fairly consistent evidence that sitters and patients had non-verbal conversations with each other and that things such as touch, prayer, meditative states and even possibly the thoughts of sitters exerted an influence on patients’ heart rate patterns. However the most uniquivocal and unexpected finding of this little project was the effect of the experience on sitters themselves.

The Myth of Separateness Debunked

Prior to starting this project, I tested sitters to make sure that they had the ability to maintain at least some heart coherence (or states of well being as seen by their HRV). As a result, I had a baseline of their ordinary states. However, out of 27 sittings with patients in institutional settings, there was not one in which the sitter’s state of well-being equalled their pre-project state of well-being (as measured by HRV). Not even close. Apparently either the setting or the activity itself exerted a strong, negative influence on sitters’ states of well-being. I suppose that this stands to reason. Many people avoid places like nursing homes, hospitals and institutions where people suffer and perhaps this is why: our very bodies register the experience and we may literally give up some of our well-being or “coherence” when we walk through the doors, at least temporarily.

What could this mean for staff who work and live with people who are sick or dying from day to day? And if one person’s suffering indeed exerts a physiological effect on another, what can it mean for patients to be grouped together in suffering to expedite caregiving? Might this outcome be at least one factor in the phenomenon of burnout that is rampant among caregivers in hospitals and nursing homes, as well as caregivers generally who work with trauma? Might it explain why most people want to die at home? I had lots of questions, and still do. Not the least of which was….

Is Compassion Safe?

We could conclude that sustaining strong empathic responses to suffering is a dangerous enterprise that perhaps will one day need OSHA regulation, something like exposure to environmental toxins. We could. Except for one thing. While it is commonplace in facilities such as the ones where I was working to see overworked staff members in institutional care that look as if they are about to either kill or collapse (certainly I experienced that myself as a hospice staff person), there are notable exceptions to this phenomenon and people who seem to defy burnout. Further, my experience in these situations as a volunteer was also often a very positive one. I often left feeling expanded and uplifted. I may have been affected in the moment, but my post-sitting experience seemed just fine. Part of that may have been my intrisitc motivation: I was there just to learn. I was there for myself and sitting with my own questions.

For the sitters that participated in the project, the report was mainly the same. It was sometimes tough to be with certain patients, but somehow most sitters processed it into good growth for themselves. Even though they had been challenged on many levels of their being, four of five reported that they would do it again because it had given them something on a personal level. This leads me to ask the quesiton: what makes the difference between some experiences, which seemed full of meaning and growth, and the apparent experiences of others who commonly seem overwhelmed and disengaged? Could the motivation of the caregiver, the context in which these experiences occur and what happens both before and after them have a lot to do with what our mind/bodies make of the experience?

Obviously the raw volume of exposure to pain and need, intense demands to “do” and document things in linear time as well as understaffing play large roles in burnout for care workers. My heart, at least, doesn’t seem to understand time pressure to care for people. True caring, in my experience, happens in a kind of time that is different than linear, chronological time. The Greek word for this synchronous or non-linear time is “Kairos” (hence the name of this endeavor). I have wondered if the lack of Kairos time to engage on a heart level itself plays a part in burnout. It certainly felt like that to me as a hospice chaplain exposed to an overload of patients in situations in which I could not possibly build meaningful relationship. When I have occasion, context and time in which to make a deeper connection with patients and families I generally feel nurtured and find a greater sense of meaning. I further have wondered about frozen and efficient attitudes that caregivers sometimes adopt, or even the sickly sweet ones. Could they offer short term protection from feelings and a certain efficiency, but could they also be factors in longer term exhaustion when the work itself is not allowed to penetrate to the level of personal meaning and growth? Research on burnout seems to support these observations, pointing to the need for flexibility, self-regulation and safe places to talk about and make sense of experiences.

Exploring the Possibilites of Growth through Compassion

Granted, these explorations were only a series of 30 minute experiences, not a series of 8 hour shifts stretching into eternity. It was intensive presence but relatively short. Still, these results may open a window of understanding on this issue yet another crack. There was something different about the sitters that I worked with. There was a sense of adventure that we shared, a sense of comraderie trying to crack the mysterious together. It felt meaningful even if it was crazy. Further, the sitters were supported by the constructs of the study, we were regulating our contact with the patient ourselves, and the short study included both surveys and interviews with the sitters about their experiences which forced self-reflection.

There are many in nursing, psychology and social work who have been working intently for years on the study of compassion fatigue and burnout. There is much that I still need to learn. But I am still crazy enough to extend this project, should I find another willing group of patients and families, and begin to explore some of the many questions it raised about the nature of our contact with others who may be dying, in pain or trauma. It seems likely to me that the ultimate effect of compassion on helpers is context dependent. Inadequately supported, effects can perhaps accumulate to be overwhelming and even physically debilitating, but when held in well-designed, supportive contexts in which we find our intrinsic motivation, the practice of compassion may be the very balm to help us heal with another into the best of ourselves in a win/win paradigm. That is one of my theories. If this is true, what might need to be in place so that caring does not become toxic to body and soul?

These are some of the questions Kairos was started to take on in concert with many others interested in these questions. In the next few blogs I will be taking up some of these questions further, and present offerings of hospice workers on their work. As always, I welcome your experiences, responses, objections, ideas and even….indeed, compassion.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals.

Hospice Workers (and others) Meet to Contemplate Their Own Death

by Jeanne Denney, Mary Baier and Jerry Muhlenburg

I have spent the last six weeks helping people do something that Americans seem programmed young to avoid at all costs: think about death. Not just death facts and statistics. No. Our own personal death.

The premise of the five evening “Planning on Dying” class I just hosted was to learn what we practically need to know to prepare for our own good death and demise, and at the same time explore our experience with the process, perhaps discovering how our unconscious fears of death impact our lives. I hoped we would discover that death contemplation with support could ultimately enrich our daily life. It was a bit ambitious for five short evenings. Still, it was one of the most rewarding explorations I have done in a long time. Judging from the response of the class, it was good for them as well. Of the 11 people who participated in this experiment, four were hospice volunteers or worked with elderly, one had been a hospice aide at one time in the past, two were or had been struggling with serious illness, one was preparing herself to work with the elderly and the rest were simply adventurers of spirit.

Though a dying patient’s (or dead person’s) “wishes” are often discussed by death professionals and families, we seldom actually know what they would wish with certainty. This is because we seldom allow ourselves time to develop wishes for our own death before we are compromised by its processes. Our main wish is that just it doesn’t happen now! So, one of the first questions the class considered was what our best case deathbed scenario might be, and our deepest wishes for our dying process and after. Two class participants graciously shared some of their own creative writing about their discoveries, and offered to share it here on the Kairos Network Blog. May I introduce the wishes of

Defending Against Our Own Needs: Reflections on Burnout

By Jeanne Denney

 It has been about ten months since I made plans to start the Kairos Network and Project to study and address needs of people who give care to others.  It was an experiment.   I started the Network for death and dying professionals  after having a good experience in  a regional birth professionals Network here in New York called Birthnet.  Birthnet is a good natured sisterhood that has been around for years advocating for natural birth.  It now functions mainly as an online  group for referrals, information, networking and support.   It demands nothing but a small yearly membership and is a place one can go after supporting a bad birth experience to process and regroup, to find out about an M.D.’s birth practices, or the herbs for pregnancy ailments.   It was so clearly a model of positive support,  I thought that the value of connections between death professionals would be self-evident to those who work the other end of life.  Having worked one year as a spiritual care coordinator at a hospice, I knew something about the needs.

Death and eldercare workers are busy and often tired.  Trying to offer something as undemanding as possible, I first established an internet group that required no face time or money and asked friends and colleagues to join as a simple experiment in the value of connection.   I got about ten no’s to each yes, for a long time getting only no’s.   I was overwhelmed by reluctance.   Here is a sampling of responses:  “I am just too busy to add anything else in my life.”  “I don’t need to connect with co-workers, I have my family.”  “I just don’t want to talk or read about this stuff after work hours.”  “I do enough.”  “When I am not working I want to think of something else.” “Maybe later.”  I realized that I was talking with people who were probably overwhelmed and had an image and experience of connection as a thing that necessarily depletes, rather than renews.   

As the data from my first naïve experiment came back, I was filled with new questions.  Was there really no need for support and connection?   It certainly didn’t seem that way to me from the conversations I continued to have with friends and colleagues in the field. Surely I made errors in process and my intentions may have been hard to understand.  Surely there is a sacred right to say no.   But was that all that was going on?  Had I done something foolish, inappropriate, embarrassing or ill-conceived?  Did this have to do with the stigma of offering something free in a culture of seduction and betrayal?  Fear of groups? The refusal to eat of the starving?  The blithe indifference to self-preservation of the hypothermic?   Are death and dying workers fundamentally so different from birth doulas?  And finally, did it really have to be this way?  

The Upfront Cost of offering Free Hugs

Reviewing these questions in these ten months I have to notice how often I have felt remarkably isolated despite my strong intention not to do it alone.   I felt much like I do walking into a room to offer support to an angry or unreceptive person at end of life.   I had to reflect on how difficult it is to bring the idea of connection as a net positive when there has been a history of disappointment,  and to be fully present with both misunderstanding and rejection.  Like Juan Mann in the Free Hugs video, what I hoped to bring to others through simple connection has most often been feared as an inappropriate demand on limited resources.  I too became familiar with the look of “what weird thing do you want from me?” when the answer, had the question been asked, would only have been “to make connection” “to give and receive” “to co-create” or “to explore the power of the heart to change both of us and our work.”  Indeed, these days that may be weird.  The overwhelming response brought me, like Juan Mann, to my first learning:  Opening  even small opportunities for heart connection in places where it is not usually present brings up things for people.  Doing it without enough support is risky.

Unpacking the mystery of indifference

I probably would have taken this all as a personal failure had I not been familiar with research on compassion fatigue, burnout and vicarious  trauma.   Though I may have been naive, I also understood that, just as my colleagues were being affected by the traumas of the people they were touching without adequate support, I was beginning to experience vicarious trauma by offering to touch the pain of  their caregiving as well. 

Fortunately, having studied body psychotherapy, I also understand some of the origins of this problem in our body, energy system and our human development.  Many of us become caregivers because we did not ourselves receive adequate care in early development.  We became especially sensitized to the problem of needs of others and took a deep vow very young to meet them at all costs, to be a really “good giver”.  At the same time, we were usually equipped with a relatively weak experience of receiving deeply ourselves and a damaged self-care low fuel alarm that seldom registers “empty” until our resentment makes us ready to kill.  It is likely that we learned to defend against the voice of our own needs as if it was an inner enemy.  Later we present as needless, appropriate and efficient.  “What me need?  I don’t need anything.  I am a good giver.” (Not a bad, vulnerable, needy receiver).  Of course this is my own story as well. In most cases, this split and heartbreak was also shared by our primary caregiver.   

Unfortunately the imbalance of our young responses to needing sets us up for caregiver burnout, a pattern that needs conscious adult re-patterning so that we can truly receive the joys of our work.  To quote writers Grosch and Olsen  “The hunger for mirroring and the inability to find it in many work environments are the primary causes of burnout” (When Helping Starts to Hurt, 1994). 

 What are some of the most effective ways of re-patterning this?  Alas, one big one is creating community with others who do similar work, supporting the task of finding meaning and pleasure .   Others are finding venues for respect, recognition, and sources of needed information.  Another is the speaking and hearing of our work stories.  Others are creativity and body awareness.  Measures such as these support clarity, renewed energy and meaning, even though initially, yes, they seem like just more things to do.

Admittedly Kairos has had a timid beginning.  But it has begun, thanks to a few fearless friends willing to contribute, engage with me, listen, help me laugh and be excited.    I have to remind myself that a principle of Kairos that interested me from the beginning was the idea of allowing things to unfold from intentionality, rather than forcing with an imbalance of will, allowing myself not to lead in an ordinary way but by making mistakes and “learning with”.   That this project began through an enactment of my own issues, indeed the very issue it seeks to be with has made me laugh.  This form of creation may have a more meandering and uncertain course.  I am not able to control its process.  Yet this is the way of the heart as I understand it. 

I am still here and feeling better now that I have openly reflected on my own experience.  I am still interested in creating safe haven for heart work in concert with others.  I am still willing to hold space for change with the optimism of a sign that says “Free Hugs”.  Saying no is always respected.   Still, saying yes is so much more interesting.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY.  She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. If you are a caregiver interested in joining the Kairos Network, just send her an email. jeannedenney@gmail.com

My Friend Kathryn

By Fran Harmeyer

This post is offered by Fran Harmeyer, an OT from Connecticut that has worked for years in end of life care.   It offers an excellent and typical account of subtle communication and the development of relationship in end of life care.   Thanks Fran.

I worked in a skilled nursing facility a while back. This one was for  downwardly-mobile elders, widowed factory workers, WWII veterans, maiden aunts competing with their aging sisters for care from already strained family members. Other residents included leftovers from the enlightened day of emptying the state mental institutions without a plan. This place looked a little like a 1950’s elementary school in a state of benign neglect. It wasn’t falling down, but it appeared a little weary, like its inhabitants. Once inside, the tile floors glared up at you and the fluorescent tubes above showered long sterile halls with a bilious green tinge. The odor wafting through the tinge was invariably the smell of urine and bowel evacuation, sometimes old, sometimes new, but always pungent enough to stop a deep breath short.

I worked 40 hours a week for 2 years in the rehab department. The staff was uninterested in us.  To them we were pushy therapists that just kept trying to change things. We were largely ignored. Nobody really cared what I did there anyway, I thought.

Kathryn must have been about 50, hair curly black and thinning, dark bushy eyebrows, full lips, opalescent olive skin and one large front tooth. She had had a stroke about 5 years before and was bed bound. She was not a small person, maybe 5’8” and as stiff as a board. Her toes pointed down, contracted hard toward the foot of the bed, and were exquisitely sensitive to touch. “OOHHHH God no!” she screamed when she slid down in bed pressing her toes against the foot of the bed. “OOOHHH God no!” whenever she was touched gently or roughly. I would sometimes watch as the aides cared for her. She screamed bloody murder whenever she wanted anything. It was her way of asking. In this nursing home, generally, it was the only way of asking and she wasn’t the only one.

My office was directly across the hall from Kathryn’s room, so I always knew when she needed anything. In fact, when Kathryn needed anything, I was unable to work. Her screams were so authentic, unnerving and …loud. This is how I met her. One day, I couldn’t take it anymore, so I went across the hall and asked her what was wrong.

As soon as she saw me, she went quiet, her face became placid and she politely asked me to get her a drink of water. Easy enough I thought. I got her a glass of water, put a straw in it and held it for her to drink. She couldn’t reach with her right elbow stiffened and stuck in an “L” shape preventing her from reaching her mouth and her wrist was almost folded over on itself. Her left arm was limp from the stroke. When she was finished drinking, she thanked me very much, asked God to bless me and thanked me again. I left the water on her bed tray.

Her speech was very rapid, tumbling in short bubbling streams. She had a kind of urban dialect that suited the speed of her words well. I seemed to always understand her though.  I came to admire her resourcefulness in getting things done. She was a person with no ability to care for herself, at the mercy of the schedules of others, and still finding a way to get things she wanted and needed.  After weeks of tending to some of her daily needs, I asked her if I could move her arm a little (the contracted one). As I took her hand in mine she yelled loud and clear “Oh no, lord ahmighty God no”. I asked her if I had hurt her, she turned to me and said calmly and clearly “no, but sometimes I get afraid”. I sat with her hand in mine for awhile and then left.

Each day after that I would get Kathryn something to drink, ask her if I could work with her arm and each time she would let me know when the session was over by yelling loudly as if the end of the world was nigh. It was unsettling at first, but I eventually came to accept her communication as if she had said “ok, thanks for coming, but we are finished for today, I’m tired of you.”

During our sessions we would either chat or watch TV and for Kathryn her “stories” became intertwined in our conversations. She would tell me I didn’t have to have that baby if I didn’t want to and that I should never let him hit me like that.   I usually agreed with Kathryn’s pronouncement, because she made many good points about survival ala soap opera story line. I liked talking to Kathryn about life. We were both pretty philosophical and thought a lot about decisions people made and why people did what they did, at least it seemed that way to me.

My life was difficult when I met Kathryn. I was unhappy in my marriage of too many years, trying to recover from unsuccessful fertility treatments and dealing with my husband’s drug habit. It occurred to me in the odd sane moment that there was some incongruity in the flow of these three issues.  Why go through fertility treatments with a man who is a drug addict? Why stay married all that time to someone who is more seriously committed to joints and lines than the well-being of his family? I obsessed about divorce but spoke to no one.

One day I entered the room with a brace for her hand and, by this time, she let me move her wrist to a normal position. Before I could start the session, she looked at me with wildness in her big buffalo brown eyes and said “If it’s no good, you just got to go. You just got to leave him if it’s no good. Uh-uh, he don’t treat you good? Git on outta there.”  “Really? Kathryn? I should just go huh?”  She replied, “Yes ma’am, don’t you stay another day, he don’t treat you right, ain’t no use with a man who no good”.  “What are you doing in my head, Kathryn?” I asked myself.  I had a feeling she knew what a “no-count man” was. Yep, she knew what she was talking about. She told me a story about a big man who came at her to cut her and she fought back and didn’t let him do it. It was hard to get the details or a clear chronology of what actually happened, or if it did happen. But there was something about her animation, a wild look in her eyes and the tension in her voice that I always believed.  Kathryn was my buddy in those days. She needed what I needed, what we all need, want and deserve: A hand to hold, someone to help, someone to care. 

I was working with Kathryn’s roommate one day and at the end of the session suddenly became overwhelmed with the desire to hug Kathryn and give her a kiss on the cheek. There was no rhyme nor reason to it. A strong feeling just came over me. Of course I wasn’t going to do it. It wasn’t the professional thing to do. She wasn’t even on my caseload anymore.   Just as I turned to leave the room, Kathryn stopped me and said, “You know what I would really like you to do?”   “No Kathryn, what”?  “I would really like you to come over here and give me a big hug and a kiss!”

 So I did. You don’t argue with a mind reader.

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

Contributions to the Kairos Network Blog are made by its members and others who do elder and end of life care.  If you are interested in offering your stories and insights to this blog or joining the Kairos Network, please send me a note at jdenney@email.com.

Reflections on Sitting Vigil in the SNF

By Jeanne Denney

The first time that I sat vigil with someone near death I walked into a room with a tiny woman named Gertrude in the run-down nursing home that I frequent.   It was afternoon.   Gertrude was curled in her bed with her toothless mouth open and her eyes closed.  Part of her foot had gangrene.   Across the room on a very loud TV were two women ripping off their shirts, shouting and fist-fighting on the Jerry Springer show.  The door to the room was open and sounds from the hall filtered in.  Beeping, alarms, telephones, the loud voices of frustrated aides calling directions to the hard of hearing.  Angry and desperate residents in wheelchairs calling for help.  The full din poured in without obstruction or deference, settling near her thin, white nest of hair.  Add to this the smell of cleaning fluid, pee and instant gravy comingled. 

I tried to imagine what it would be like to be Gertrude dying alone after such a long, long life, in a place offering  few filters between her delicate soul’s process and the wide world of suffering.  Most significantly, no one seemed to be aware that these were Gertrude’s final hours.   Last week a similar scenario unfolded with a 104 year old patient that I have been visiting for 3 years.  Margaret was dying to a loud episode of “Dancing with the Stars”.   She had lived as a fixture in the hall for something like 16 years, longer than most staff had worked there.  As one resident aptly put it on day as I returned her to the hall,  ”She belongs under the clock”.  Still, despite her own long vigil, when Margaret’s death was approaching there did not seem to be an institutional sense of it, or of her life or death’s significance. 

Contrast this picture with another one that I happened into a month or so ago in a different facility.  I was called late in the day to the bedside of a middle aged African-American woman dying of about ten diseases at once.  She had lived there for about 10 years.  I arrived at around 9:45p.m. to sit vigil, a new comer to this nursing home.  I was understandably met at a locked door by nursing home staff who asked protectively who I was and who I was looking for.  When I told them I was from Hospice, they immediately knew the patient and said knowingly “Oh, yes, she is in room 257 on the second floor”.   I sensed that they knew her condition, that my presence was welcome and considered meaningful. 

When I arrived on the second floor, staff checked me out at first, wary of a stranger arriving, and hovered to see what I was up to.  Since Hospice is not so commonly used in this facility, the experience of a vigil volunteer was a new one for them.  Still, it was clear that everyone on the floor knew that Kate was dying and that their protective gaze was upon her.  One by one they dropped into her room to  check on her and do this thing or that, all of which seemed to be their way of saying goodbye to someone who was like family to them.   One stroked her hair and allowed herself to feel her sorrow “Well, death is part of life” she said wisely, reflecting on the teachings this patient was offering her.  I talked to each one of them about their relationship with the patient and they hid their tears.  Or not.  Though the physical conditions of this nursing home were no better, the human environment could not have been more different.  As I left that night I was touched by the aide letting me out of the locked door as she asked me almost urgently “How is she doing?” “She is dying” I said.  She shook her head and muttered a few words in remembrance.  Kate’s passing apparently was affecting everyone as a meaningful event.  A community event.   

Unfortunately, the first scenario has been much more the norm than the exception in the places that I frequent.  I show up, turn off the proforma loud tv (in some rooms there may be 2 and 3 competing loud tv’s), and try to do what I can to make the places of dying sacred and worthy of a final passage.   I pull curtains, move chairs in the overcrowded spaces, close doors, lower lights and set up music in the room. I bring aromatherapy oils, a pendulum (which helps me evaluate their state), a prayer book or some readings.  I introduce myself and tell the person of my intentions to just support them with my presence.   I sing if I feel moved.  I pray.  I meditate.  I try to “find” them in my mind’s eye.   I know little or nothing about their life story except what I glean from pictures, cards, the staff or the person as I find them.   Sometimes there is a sense of peacefulness.  Sometimes the person that I meet is thrashing and agitated as if engaged in a deep struggle.  Sometimes I feel right at home in their presence.  Sometimes I feel awkward, as if I had walked mistakenly and uninvited into the most intimate scene in the movie of their life.   Sometimes as I sit I write about these experiences so that I am actively engaged and curious about my own experience in the moment.  Most of all I try to love and reassure.  I never assume that the patient is not aware of everything that I say, think and do.  Largely I experience these moments as extraordinary privileges.

Though my own experience with the patient is usually satisfying, I am often aware that it could be so much better for everyone.  Much might especially be done to help the culture of nursing homes honor death.  Without a sense of meaning being brought to dying as a familial or community experience, the fear and stress of everyone in a care facility is increased.   One clearly underutilized resource in this shift is that of the residents themselves.  A number of times as I have been in vigil I have been joined by someone in a wheelchair peeking in, curious about what I am doing.  I invite their presence.  The sweetness, curiosity and gentle care of roommates or other residents when I have told them that a patient is dying soon, even and especially those with dementia,  has  supported my idea that staff and residents need to participate in the dying of their peers and contribute to the sacredness of the event .   For them as for me, the patient can become a great teacher delivering a much needed final lesson.   

In such spirit, Megory Anderson, in her book  Sacred Dying, speaks of a nursing home that puts a candle on a small table outside a room where someone is dying so that a community can be a part of the passing.  When I think of this, I think of how far this is from the Jerry Springer show.  How far we still have to travel.  And yet, like the day in 1960 when everyone took off their hats, the day we decided that public smoking wasn’t cool, or that water was better than soft drinks, I know that the collective consciousness can shift suddenly, almost overnight.    For this shift of consciousness and for that of all of the Nursing Home X’s of the world, I anxiously wait, continuing my vigil.

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

The Vitale’s

Contributed by Fran Harmeyer, OT

She still kept his picture in her wallet. He was 15, working for the butcher around the corner. She was 13 when they met. She took a long look and said, “He’s the one, I’m gonna marry that one, he’s the most handsome boy I’ve ever seen!”. And that’s what happened.

I met them 65 years later in a nursing home. She showed me the picture and told me the story. He had had a devastating stroke.

He was paralyzed on one side, arm, trunk, leg. He was confused, his speech was out of the side of his mouth, but he recognized Vera and hung on her every word.

The first week of therapy was really tough. Walking was a kind of two-sided dragging with a therapist on each side of the walker. Stuffed into a throne of pillows he was able to sit upright in a recliner. Still, as the days went by, he was more alert, looking around, following visual and verbal cues. And he was more responsive to the love of his life, Vera, his partner, the mother of his children, the woman he had dedicated his life to. I couldn’t wait to see how they encouraged each other along during his recovery.

The second week he took a turn for the worse and lost his ability to swallow. He was choking on his own saliva. When people reach this point, they are not allowed to eat or drink by mouth because the risk of aspiration pneumonia is too high. Aspiration pneumonia means you inhale your saliva, food and liquids into your lungs because the muscle that closes off the food tube when you breathe is paralyzed. The doctors gave the family a choice, keep him alive with a stomach tube to keep his nutrition intact or offer comfort measures only. Comfort measures only is a medical phrase that means you are letting the person progress toward recovery or death without medical intervention. No extra breathing apparati, no tubes in the gut or the nose, no pumps, no prods. The family chose nature’s course and Vera calmly began her vigil at his bedside every day. “He was a good man, a good, good man.” She told me.

When you work in a nursing home, some clients and families just grab you and you find yourself head over heels before you know it. This couple got me. I was amazed, in awe really, of two people who generously accepted what the other was. She was still proud of that young, energetic ambitious boy she knew five- plus decades ago. You could see her fondness and loving admiration for the person she had seen succeed, fail, and otherwise hack a path through life. I wanted to know what they knew.

I hadn’t seen the couple in a few days, so I stopped by the room. Vera was sitting in a chair next to the bed down by the foot, watching her husband struggle for breath. He was restless and seemed uncomfortable. You could almost see him trying to get out of his own body. I walked over, said hello and stood by the bedside. I saw the shallow panting that means the systems are shutting down. I put my hand on his chest to calm him. His breathing slowed. He stopped thrashing and then… his breathing stopped. It didn’t resume. I waited. Did he just need that little energy boost to finally let go? I wasn’t sure I was ready to be part of that , but at the same time I was aware of being pulled inside a seemingly magical process. The energy of the spirit trying to leave such an anchored, hard-wired-to-survive organism seemed like such a wonderful thing and such a difficult thing. I was transported to some kind of spiritual office where my job was to collect the tears of a lifetime, to hold them in reverence and honor, so that Vito’s life force could move on unencumbered. I was dumbfounded by the privilege.

Move on where? It didn’t matter. What tears? I didn’t even know this person. I wasn’t really concerned. Somehow it was just my job to hold his lifetime of earthly concerns in some kind of energy bowl just long enough…Almost like holding your friend’s purse while she tries on clothes in the dressing room. It seemed so natural. At the same time, my procedural brain was switched to high. Should I call a nurse? He’s not breathing. People in a health care facility aren’t supposed to die. I should pull the emergency cord. I should probably be documenting something. I took my hand away. A minute later his chest heaved and he was breathing, slow and deep. His eyes opened. I took his hand. “Are you an angel?” he asked. Before I could modestly remind him that oh no, I’m just a… His wife, from across the bed, without missing a beat, without blinking an eye, simply said “oh…he thinks you’re me”. “Honey,” she said reaching toward him, “I’m right here.” I went back the next day to see what else I could learn about that long term magic between two people, but he was gone. I silently thanked them for the lesson and went to my next patient.

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

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

Why is Death so Hard to Say?

 

I have been working hard for the last several months in the scraps of time around work, family and household chores to commit myself to a new project I am calling Kairos.  I got inspired to use this word from an article by psychologist and writer Mary Pipher in a Psychotherapy Networker article.  Mary noted that Kairos is a Greek word for synchronous time (as opposed to linear time or Kronos). She called it “spiritual time.” Yes”, I thought, “that is the perfect word for one of my passions, which is holding space for people to die in and for the caregivers that also do this work.” 

Unless we are heinously tampered with in our process, there is something mystical and wonderful about the one precious moment that we pass either into bodily life or out of it.  It requires a certain kind of support and a certain quality of care that is not easy to provide. So I have begun this organization called Kairos.  It is for helping professionals of all kinds, but it is starting particularly as a place for death, dying and eldercare professionals to meet and support one another.   Since creating from unspeakable experience, being witnessed in our work, and witnessing all seem to be potentially important things for people who work in these realms I have created this blog within the Kairos project for us to creatively express, ponder and process aspects of our work and experience.   

At the same time I have also begun some other death education projects in the last few months.  One is a program I call “Planning on Dying” for death contemplation and planning; another, called “The Core of Dying” is about the role of the heart and energy in dying.   I have talked with friends, family and enlightened souls about these projects.  They have been terrifically helpful in their support and reflection.   However, all of this has brought me to a peculiar and unexpected observation.  When I propose a title, I will often hear:”Do you have to use the words ‘death’ or ‘dying’ in your title?  Can’t you just say ‘end of life’, ‘passing on’, ‘crossing over’?”  ”Can’t you talk about life, not death?” ”Can’t you somehow be more reassuring in your title?”  “Can you bring in sex?”  “Can you make it entertaining?”   I hear that there is something off-putting about these words that will instantly drive people away in droves if I use them, much like a leaf-blower on an autumn driveway. 

I am stunned, actually, at the consistency of this kind of remark and the creativity of the euphemisms for death.  Obviously this is advice that I am choosing not to take in full.  I am taking the risk to say it.  But so it is that I start this blog with a challenge to contemplate this word.  Why is Death so hard to say?  Or perhaps more accurately, so hard to hear? 

Much of the difficulty of supporting death, dying and aging is that, because we deny the facts and the processes in our life and culture, they become traumatic events rather than simple and beautiful processes to be supported, borne, celebrated and even enjoyed no less than a first birthday, a wedding or a high school graduation.  My speculation is that we are making two faulty correlations:

1)  That death and trauma (as well as illness and pain) are the same thing.  This is probably because death CAN include these things, because there has been a lot of traumatic death in history and perhaps because Hollywood and the internet makes a lot of money obsessively re-creating these now fairly atypical deaths in visual form.

2)  That life and death are opposites.  This pervasive and fairly materialistic assumption is seen constantly in the way that these two words are paired in opposition “Life and Death”, “Life OR Death”,  ”End of life” (for death), etc.  We sometimes correct ourselves in moments of insight and sanity, at bedsides or wakes or with the bereaved by remembering what is perhaps more the truth:  “Death is part of life”.  

Indeed. This truth raises the logical problem of whether something that is part of something can also be its opposite.  The opposite of death is actually birth, not life. Though it can’t yet be proven, death is perhaps only a synchronous moment like many others, an end of one type of life. Life (big L), as far as I know is constantly pulsing, expanding and contracting ceaselessly, and has no opposite. 

The terrain of dying, though much contemplated through the ages and universally experienced, still in some ways  is a vast, unexplored realm.  And the  people who bear witness to death with open heart, willing to be taught and to speak their experience, have a lot to say. They are our guides over this terrain.  Let this be a place for us to write.  So that, one day, the word “death” may be restored to its rightful dignity and associated just as commonly with words like lightness, ease, delight, and joy.  Pain too, but also and even ecstasy and transformation. 

If you are interested in offering your stories and insights to this blog or joining the Kairos Network, please send me a note at linkedin.com (Jeanne Denney).

May the writing begin.

Jeanne Denney is a therapist and hospice worker in Rockland County, NY.  She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals.