The First Patient: A Hospice Worker’s Chronicle

March 11, 2011

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

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

February 7, 2011

by Noell Goldberg

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

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

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

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

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

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

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

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

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

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

Grief is Contagious: Try and Catch Some

By Jeanne Denney

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

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

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

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

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

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

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

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

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

Death is Not Contagious.

August 9, 2010

by Jeanne Denney

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

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

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

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

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

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

Long Term Care: Making a Connection

July 7, 2010

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.

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 clinical social worker and eldercare worker Mary Baier and the final words of hospice volunteer Jerry Muhlenburg:

On What I Wish for in My Dying by Mary Baier

1. My greatest hope and desire for my dying is that I unshakably feel and believe in my friend, Alice’s, deep caring for me.

   Ideally, Alice will be at my death bed–if not, we will have met shortly before–or I can talk with her by phone, as we have so often.

   We will be silent together, as has been our practice. We will speak or not, as we are moved to–no script will be necessary. I shall know her caring, she shall know my love.

   There will be flowers, one of many pleasures we share.

   I will talk of Stephen and Allan and Lucille, whose dying I have had the honor of being part of, each dying with grace and courage, each being an example to me and to many.

   I like to believe I will be meeting them, though probably in a sense unimaginable to me.

   Perhaps there will be music, music of my younger years when I thought my life would be different from what it has been.

   I will remember the idea that it is not what we accomplish but what we have overcome which matters. This will give me a sense of peace.

   I will own my life, successes and failures, not least an ability to know love and give love.

   I will think of myself as a good friend, a good student, an exemplary patient,

   I will ask that I be remembered in the poetry which has moved me, hope that those remaining have glimpsed kindness, gentleness, empathy and caring.

   I will remember the good times, especially those existing in the midst of trauma.

   I will be grateful for all I have loved and learned, let go what is not to be, appreciate all that has given me, by so many, in so many ways

   I will let go in silence, knowing love needs no words.

   I shall reconcile myself to ending, hope for beginning.

   Visitors will come, responding to my invitation; I shall accept that some may not want to or be able. Jeanne will visit–I shall tell her how much her presence and teaching have meant to me, becoming part of my living and my dying.

   I shall make peace with my parents, each in their own way.

   I will do what I can to offer hope and comfort to all who surround me, whether or not they are present physically. To the extent possible, I shall say what needs to be to everyone I have loved. Cry if I need to, laugh if I want to, bless those whose presence has been a blessing for me.

   I shall know God while believing God is unknowable.

   I shall be sure my body is donated, especially my brain for research–perhaps help to find a way to treatment/cure for the illness from which there has been no escaping.

   I know I may die alone. I have friends–no one who would sit with me as I die.

   I shall recognize that all these things may not happen and still I may have a good death.

   Each ending brings up every other–blessing and curse.

   I shall stop struggling, let life and death take their course.

Not a bad way to die or to live a life if you really look at it. Which, of course, is what most of us discovered.

What I Want To Say When I Am Dead by Jerry Muhlenburg

1. Do not think that I am here in this box,
   But know that I am here.
   The river is here, and the earth.
   The sun rose today right on time,
   As it will tomorrow,
   As it did all my days.

   I am here because you are here.
   All my ancestors and all my children
   And their children
   And all my relations living and dead are here.
   We didn’t plan it this way
   But it happened anyway, thanks be to God.

   Do not think that my life was special
   But know that it was amazing.
   My friend used to say to anyone –
   Whether they cared to listen or not –
   Just to be is blessing,
   Just to live is holy.

   Do not think that death has meaning.
   Only life has meaning,
   And only love can provide it.
   The rest is foolishness and vanity.
   Know love and let go of thinking.
   Let go of thinking and know only love.

   Do not think there is more to do.
   There is always more to do
   But every life is a good one
   Whether long or short.
   Judgment has no place
   Because the evidence is always insufficient.

   Everything is related to everything else
   In a web so complex
   That causality cannot be assigned.
   It goes all the way back.
   Know only that this moment
   Is all the time there is.

   Do not think we are separated.
   We are one – always were, always will be –
   Whether we know it or not.
   Let yourself know that joy
   Is the natural state of the spirit.
   It’s where I’ve been and where I’ve gone.

1. By the way….we took a “Death Anxiety Assessment” which had been developed by psychologists at the beginning and end of the course. Most, including me, found that their anxiety was meaningfully reduced.

   So far I have enough interest for the course to be repeated in the fall in Rockland County, NY and in New York City. If there are more adventurers among you, hospice workers or no, there is still time to contemplate your own death through planning. It seems very likely that working on our own death will allow us to face what we experience in work with others with greater heart. At the very least it will guide the ones that care for us when our wishes need to be known.

   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.

My Friend Kathryn

January 2, 2010

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.

Reflections on Sitting Vigil in the SNF

December 8, 2009

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.

The Vitale’s

November 6, 2009

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.

Why is Death so Hard to Say?

July 27, 2009

 By: Jeanne Denney

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.