The 11th Hour  Part 1

          When I was working in Hospice, the opportunity came up to offer an additional training to our volunteers so we could provide the service of sitting with patients who were actively dying.  Sometimes, families want to know they can count on hospice to be a stronger presence as their loved one draws closer to dying. Having volunteers comfortable with and educated in the dying process would make this expectation more reliably available to our families. 

          The drain on resources for any hospice agency can be extreme when the demands are the highest; the first 72 hours after admission  and then again the final days to hours before death. 

          So we put together a training for interested volunteers based on the work of Barbara Karnes booklet, The  Eleventh Hour. We thought the interest would come primarily from our volunteers but it turned out there was an interest among others as well; staff members who were new to end of life work and community members who wanted to know more about the opportunities available through volunteering with hospice. 

          Eleventh Hour, also known as sitting vigil, addresses the needs of the person doing the work of dying as well as the needs of others who might be present; such as family and friends. Because this was offered through Hospice, we were focused on expected deaths. A death that has been forecast and predicted. 

       There’s a big difference between an expected death and a snatch-away death; but  even in tragic, unexpected death, if there are moments of life still remaining, and you are there, you are with someone in their 11th hour. 

    One of the really great things about Barbara's books are how easily they can be woven in at a time when there are things happening that are foreign and unfamiliar; like the imminent death of a loved one. Her books are short and small and have large print and are easy to read. All important details under the circumstances when they might be used by family members. 

          It didn't take long, once I started working with people at end of life, to understand that  we do not serve them well, when we think we know. There is no ONE way to approach dying and no one way to approach the moment of death; no 'one size fits all' recipe for the changes that can happen in someones final hours. We have to feel our way into each moment. 

What does it mean to be in the presence of someone who is actively dying? What kinds of things do you think you might expect to see? What kinds of sounds do you think you might you hear? And what do they mean?  And in all of it, how do you support both the process and the players involved AND how do you care for your self? 

          It begins with what we do in our own lives before we ever enter the home or the room of one who is dying. And then remembering and honoring that wherever it is we are entering, it is sacred space. Holy and Divine. 

          Learning to read the emotional tone of someones home or their room in a facility or a room in the Emergency department of a hospital where someone is dying, requires that we first learn to be still, and listen. And to listen well, we must be comfortable with silence. And we must leave what we  think we know, outside the door. Even better, we can leave it in the car. Or we can leave it at home. 

          An end-of-life doula is a person experienced in death-bed guidance.  Every death is unique. There is no one way or right way to die. To truly be of service to a family or an individual who has been told they will die, requires having the time to get to know them.  

It's time that will not be hurried. Time, that is relaxed and open and repeated. Time, that takes time. Feeling our way in to it.....

          As more and more of us become comfortable with talking about end of life, we pique the  interest of more and more people who want to know how they too can develop a friendlier relationship with death; perhaps even going as far as to embrace planning for their own leaving and opening a conversation around it with those they love. 

          When we are invited in with plenty of time to know all the players, not just the one who will die, but also the ones who love them most, and the ones who, if the dying person is at home, the ones who will provide the bulk of the hands-on care, then, it is a beautiful dance to watch unfold. 

          The teachers in this work, the true masters, are not people like me, they are the ones who die. So being an experienced student of end-of-life means being present at many deaths, just as being an experienced student of midwifery means being present at many births. 

          It’s difficult experience to get. I remember working  with a social worker in hospice who was fresh out of school. She wanted so desperately to experience the moment of someone’s death. She had never worked in end-of-life care and had never experienced the death of anyone. No one in her family had ever died. No close friends. She was eager and anxious to be bedside at a death. But the patients just kept dying and she kept missing the deaths. It's not as simple as saying, “Boy, I sure would like to be here when you die.” We knew she wanted to be called if we saw that someone was very close to dying but that is sometimes the moment when the circle shrinks to include just those  most necessary. Everyone else sort of fades off into the woodwork, standing guard at the gate, to allow the intimacy of the moment of death to be shared among those who will be most impacted by the loss; doing all of that but staying close by for the immediate aftershock and any necessary business that must be attended to. 

I have always felt that to be chosen by the one dying as one of those to bear witness to it is something indescribably sacred. Even when multiple people are present , if you are among them, you have been chosen.  And you have been gifted something rare. 

          So you can see how finding people who have had the privilege of attending a lot of different deaths to be a resource for those wanting to do end of life work is hard. Especially in rural areas like the one we live in up here in Western Colorado.

          My personal experiences with death have not always been with expected death. Experiencing sudden, unexpected deaths as a hospital chaplain has helped me feel, even more strongly,  the need to talk about dying.  

 I can tell you that I will take an expected death over a sudden death any day. I say that because of the work I’ve done as a grief counselor and seeing the devastation left in the wake of unexpected deaths. And I have seen the benefit of having the time to wrap things up when we get the chance to. Many people will say to me that they hope to just go quietly in their sleep, almost as though they think if they just go quietly in their sleep it will go unnoticed that they have left at all.  And dying suddenly and unexpectedly does not have to be devastating for the ones left behind if we’ve been living our lives in the awareness that we will one day leave. 

We will talk more about that another time. 

          Dying is not so much a medical event, as it is a communal event, even when it happens in a medical setting.  

          I once sat with a young woman as she sat with her grandmother who was dying. 

Her grandmother was in the hospital and on comfort care. This means no heroic measures, no tubes or IV's. Her death is expected and she is being kept comfortable through the use of medicines administered sublingually, beneath her tongue. She is also receiving comfort through the gentle hands that caress and soothe her and through the presence of this granddaughter. The patient  was 100 years old. The grand daughter was explaining to me that she really needed to work the next day, a work day that would involve driving to a town 90 miles away. She was reporting feeling very stressed out about it and seemed really conflicted over it. Then she said “Nothing but a total emergency will keep me from going to work tomorrow.” And I said “What would a ‘total emergency’ look like to you?” And she looked at me kind of funny and said “Well, if my grandmother dies?!” almost as though I was some kind of fool. Well, her grandmother was dying. She was not expected to live more than maybe 24 hours.  

          I was reminded in that moment that to so many people, death is a total emergency. even when we see it coming. So, I asked her to tell me about her grandmother; what it was like growing up across the street from her, what she had learned about being a woman, a wife and a mother from the time she had gotten to spend at her grandmother’s side. The stories that came forth were healing reminders to her that an awful lot of her grandmother was still going to be here even after she leaves her old body behind. 

 And even though grandma was in a coma and heavily sedated, I encouraged her, the granddaughter, to take the time she had, that night, to sit by her bed and tell her some of the things she feels most grateful for in her relationship with her.  I was hoping to help her feel a little less like her grandmother dying was going to be a ‘total emergency’, because, really, it wasn’t going to be. Her grandmother did die the next day. 

And the granddaughter did go to work. And, when the news reached her, she was able to thank the person calling and then express her gratitude for everything everyone had done to ease her grandmothers final transition. She felt no need to turn around and come screaming back to town. Her work with her grandmother was complete. 

So 11th hour companioning can look different depending on the circumstances and the geography of a person's leaving. 

A comfortable person will almost always have a peaceful death. And I say almost always because there are exceptions to everything. And not all discomfort is biological. Not all pain responds to medicine. Some struggles happen deep within a person's heart and soul.

My observation has been that dying is not easy. It is hard work. Just as being born is hard work. Watching someone do it with Grace is inspiring. Again, the Masters are the ones who are doing the dying and when you have the honor of seeing it done well, you will never forget the experience, just as I have never forgotten the way my mom showed us how it can be done.

          When companioning one who is dying, words are usually less important than presence; just being there. As a support person to one who is dying, being comfortable with silence is a gift. I would venture a guess that for most people silence is not a comfortable experience, especially  in the presence of others. But silence, is sometimes, the only answer. Being quiet and at ease in stillness is a skill that can be learned through practice and experience.  It doesn’t mean that there shouldn’t be periods of great discourse when in the presence of one who is dying but my experience has also been that as the one leaving moves closer to the moment of their final breath, that those present tend to use lower voices, softer lighting and quieter music. 

As sounds become gentler, as voices are lowered and movement about the room becomes much more intentional,  hysterical crying, abrupt noises, harsh or loud voices are disconcerting, alarming and sometimes jolting to someone  doing the work of dying. But I don’t think it means that all expressions of grief need to be in another room. 

          Usually very expressive signs of loss come after the death has occurred; sometimes immediately after. And there is no need to move that to another room or another part of the house. And there is no need to try to get the person expressing their grief to stop. There may be a need for a warm blanket across their shoulders at some point or offering them a glass of water, or a warm or cool wash cloth, but no need to move them to another room. 

          Keening and wailing are beautiful expressions of grief that, like silence, can be uncomfortable for some people. Many people have the instinct to shush these displays of sorrow, to try to hush the person doing it, to make it go away, because we are not comfortable being in the presence of so much grief all at once. An effective guide to a dying person and their family will be able to flow with whatever is happening and somehow be like a rudder for a ship whose mast has snapped off in a storm. Because sometimes that’s exactly how it feels when someone we love has just died.

          If you are with someone when they die, it's so entirely possible you are with them because they want you to be with them. Embrace the privilege as the honor that it is. I call the  moment of death Divine Time. It is where Galaxies are born and, it is where God lives. If you are fortunate enough to be present when someone finally sheds their human form and explodes into that original formless energy, you have been invited into Divine Time. 

          I feel the need, for whatever reason, at this point, to remind you,  that as with all these podcasts, these are my thoughts, my experiences and my understandings and my beliefs. Fully trusting in a universe that provides, has allowed me to do the work of companioning the dying with very little duress or stress. I have a strong sense of continuing, and a strong belief in this embodiment of our essence as humans, being one in which we are given tons of freedom and control to really start figuring things out. Which brings up another aspect of doing the work of companioning the dying, and that is, doing the work of exploring just what it is we ourselves believe about the world. And our place in it. And what we believe about life and our place in it and, not to be forgotten, what we believe about death, and our place in it.