END of LIFE Doula Training- Boston, MA

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Boston Beauty

I attended an end of life doula training in Boston, June 23-25, 2017. We were led by Henry Fersko-Weiss, LCSW, executive director of INELDA (International End of Life Doula Association, www.inelda.org) and author of Caring for the Dying – The Doula Approach to a Meaningful Death. These are my notes looking back:

I didn’t think much before signing up for this conference. It was nearby, it was affordable, and it was electrifyingly interesting to me. I wanted to make connections; I wanted to tell my story; and I wanted to listen to other people’s stories. I was and am searching for moments of clarity that can inform and move me to meaningful action.

All but 2 of the 67 participants were women. We sat at round tables in groups of 6 or 7. I would have preferred smaller tables, and fewer people at each, but that’s the teacher in me. I always want closer, more intimate, and more talk time per person.

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The women represented diverse backgrounds and ages: predominantly nursing and middle aged, but there were yoga instructors, energy healers, and a post-graduate student Emilie’s age doing research. We got to meet one on one at meal times, when we were free to wander around outside. I found my best connections when I walked into the market area a few blocks away to grab a bite and sit out in the sun and fresh air.

I was familiar from my recent CPE training with much of the content – addressing grief and loss, the need for active listening, and the reality of how death is generally viewed and dealt with by our culture and most of the medical profession. Avoidance is the key word here. The new parts were fascinating and rich, and provided a sought after complement to chaplaincy. Here is a snapshot of some of the exercises we did:

1.Visualize your own death: How would I like to be remembered? Am I living my life so that I will be remembered that way? We were encouraged to talk to our loved ones, and ask such questions as, ‘How did you know that I loved you?’

I want people to know ME, not who I  often pretend to be. It’s not easy to show my Self to others. So many important and precious parts have been hidden for so long.  My younger brother died 6 weeks before the training, and death was a fresh experience I was still struggling to understand. I felt a sadness that I had not really ‘known’ him better. What was missing? Why had I hardly noticed him as a boy growing up, or thought about him as a person, not just ‘my brother.’ Now that he was dying, it was hard for either of us to be open, vulnerable, or fearless. The hospice nurse told me privately that 90% of Pete’s pain was emotional. I was shocked. He had always acted so strong- a big bluffer like me. Why did he seem to be holding onto and hiding his feelings? When I asked him to elaborate when he said that he was feeling despair, he said, ‘No, I’m not going there.’ Then he turned and looked at me and said, ‘Rob, you know sometimes you can really be annoying.’  I had to let go of my certainty that talking things out would help him.We were dancing around the fact of his dying, never really willing to look at it directly or talk about what it meant. However, the appearance of strength began to crumble.

The instructor reminded us that this class is about how we live our life, not just about how we serve the dying.  Although we are not in charge of how people remember us, I want to be remembered as open, vulnerable, and fearless, and Pete reminded me that I still have a lot of work to do.

2.Role play listening to and communicating with a dying person:

Who do you want to be with you when you take your last breaths? Children, animals? What kind of touch if any do you want from those persons? Do you want to be held, and if so by whom? Do you have any special music you want playing? Sounds (a thunderstorm or an ocean wave, etc)? Any special fragrances? Where do you want to be – bedroom, porch, under the open sky? Are there any special rituals that have meaning for you? One woman with a native American background shared that she wants a ‘smudging’ at the beginning and end of each day, and she wants her bed moved to the living room where she can be surrounded by all of her native American art. She said she plans on having a native pow-wow. Other participants said things like:

– ‘Don’t be afraid to be authentic when you’re with me. I don’t want to hear platitudes. And keep your judgments to yourself.’

– ‘I want my death to be joyful. Bring out the drums and the flute.’

– ‘I want my dog to be with me.’

– ‘I want help writing a letter to my daughter.

Pete had his faithful dog, Dempsey, checking in on him whenever his breathing changed, and nuzzling his hand whenever it dangled off the edge of the bed. I know animals give me a certain kind of courage. Looking at them reminds me of a natural world where death is as much a part of life as life is. After the sound of that last labored breath had faded into the stale air, Dempsey sniffed the familiar hand, walked to his cushion at the foot of the hospital bed and lay down to sleep. It had been a long morning. He seemed to know that Pete was gone.

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3.Creating a Legacy: What would it look like?

We looked at samples of what constitutes meaning in a person’s life, and ways that meaning can be represented in a concrete artifact left behind to inspire and help family members to reconnect with the loved one’s life after death has occurred.

The focus is on ‘life lived’ rather than life lost. This exercise helps dying people feel purposeful about their final days, and gives them a sense of completion. Examples of legacy projects include memory books, letters, videos, audios, pilgrimages, and collections of art, poems, recipes, etc. Doulas can coach the dying to share life stories about successes and failures, lessons learned, acts of forgiveness, values and beliefs, addressing unfinished business, and strengths and resilience, which can be shared with family, and bring joy and dignity to an otherwise confused and uncertain space.

We were given a list of 29 questions and asked to choose 2 or 3 of them that spoke most to us. Here are the ones I chose:

1.What did you love to do in your spare time?

2.What work or aspect of work did you consider the most important to you?

3.How did you spend time in nature and what made that important to you?

4.What did you collect and why?

I notice now that I chose the questions that have to do with reveling in the beauty of nature and creating things. It’s such a big part of who I am, and what I have done in my life. More than relationships, which have been so much more troubling. The women at my table asked me to elaborate on what those questions meant to me, and watched my face and body light up as I spoke about my art and music, and the beach, the birds and the rocks near my home. As the volunteer ‘dying person,’ I understood how important it is to be asked questions that stir us to share our loves and enthusiasms about life. The ‘practicing doulas’ listened to me, and we all felt the energy and we all wanted to stay connected. I felt both shy and happy – a part of me had come out of hiding; I felt empowered to have shared it, and more alive.

The following story is about my brother and the shift that happened in his mind and helped him embrace the inevitable, which none of us knew was only 11 days away: My daughter and I were visiting. She was sitting on his bed holding his hands, and started to tell him what he had meant to her and how his words of wisdom had helped her through her current life upheavals. “You told me a story, Uncle Pete, when I asked you how it felt to be dying. You said it’s like coming to the edge of a cliff and knowing that there was nothing else to do but to jump. And when I asked if you were afraid, you said, ‘No! Because I know I’m gonna fly.'” That story came to me when I felt afraid and thought I couldn’t go forward, and I told myself what you said, and found the strength to fly inside me. Thank you, Uncle Pete. I love you!’

 

 

 

Pete began to cry. He reached to pull her close to him and let his head drop to her shoulder. The room was quiet as we listened to the sound of his heart, full to breaking.

Pete’s wisdom was a big part of his legacy. That his closest niece, his ‘Emmylou,’  had taken some of it inside herself gave him the strength to let go and jump, and know that he could fly. What we give comes back to us. Now Emilie has taken him as a spirit guide, along with her Grandma Coco, to protect and encourage and inspire her life. Yes, Pete, you made a difference.

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4.Vigil Planning: What is your vision of a Good Death?

Each person’s wishes are unique. The vigil is a plan for when the person enters the active dying phase. It includes what was already mentioned above in step 2, and also outlines what the person would like done after he/she dies. I was struck particularly by our speaker Henry’s vigil plan:

“As people visit, conduct vigil, or take care of me I want them to do so in a way that honors my Buddhist beliefs and the central place of family in my life. So, please sit on one of the cushions or chairs at the entrance to my room and meditate for some time in whatever way helps you connect to the oneness of all being. By going inward and opening to the sacred you will bring a different mind state to my bedside – a mind state we will share while you are there (with me)~

This moment…only moment.”

“Please lie in bed with me, hold my hand, caress my arms, legs, face, and head. Whenever possible, wheel my bed outside onto the deck, so I can see the open sky, the trees, the stars, hear the birds, and feel the fresh air on my skin.”

You can say whatever comes straight from your heart.”

When asked to think about my death, I wrote right away that I want to die outside if possible! With the sounds of breezes in leafy motion, birds in friendly chatter and ecstatic song, a car honking somewhere, children shouting in play, their bicycle wheels rolling across the pavement; a guitar strumming – maybe Joe Walsh singing about how life’s been good or Tom Petty learning to fly…

I hope it’s in the summer when the doors can all be flung wide open! I want to see green palm fronds, and have a view of the blue or starlit sky. I want my cozy comforter and soft sheets, and the light of the sun warming me. I want to be surrounded by vibrant colors, and hear the delicate sound of wind chimes as people come and go. I like the idea of asking people to take off their shoes or any covering on their heads; to wash their hands in a bowl of scented water by the door, and sprinkle themselves and anyone they’re with, saying: ‘Peace be unto you!’ ‘And with your Spirit!’

Thinking about these things is inspiring and comforting. And why not now, when we still have time to think and share?

My retreat space at home

 

5.Signs and Symptoms of Imminent Death: This part was new and entirely interesting to me. In CPE we never talked about cyanosis or mottling, although I saw it in my brother’s hands, feet, and legs. Vital signs such as blood pressure and oxygen saturation can predict with 95% accuracy death within 48 hours. We talked about the patterns of breathing, and the slowing down of the breath, and how to recognize that death will take place within minutes to 2 hours. We discussed pain management, the use of morphine, and the current movement to educate people with terminal end-stage disease that they can voluntarily stop eating and drinking. I was surprised that there is no legal requirement to report a death immediately, and to hear that it is advisable and healing to take time with the body before calling the funeral home. My sister was very protective of that kind of time with my mother. She’s a wise end-of-life doula. Hospitals tell families to take as much time as they want, but in fact expect them to leave after a couple of hours. At home, there is so much more space to share with the dead, and to process their transition. The facts of death and what it looks, sounds and smells like was always fearful to me, and I remember I was uncomfortable when I saw my first dead body at Bridgeport Hospital. Now, I have come to see death differently.  Of course, I wonder how I will feel as I take the hand of death and begin that part of my journey.

I was surprised how comfortable I felt listening to the ‘science’ of the dying process. Talking about my emotions in the previous exercises had been so challenging. I hadn’t identified the anxiety I was feeling until I felt the relief of focusing outward again on facts. That was a big takeaway for me: my difficulty feeling and sharing emotion. I shared that with the trainer as I left, and he smiled. “You’re working on it, I can see that!” Yes, I am. Step by step.

6.Reprocessing and Grief Work: working with the family after the death. What to talk about, how to be of assistance.

This part included a section about washing the person’s body as a ritual that can be very healing and beautiful. When a person dies at home rather than in a hospital there are so many more possibilities for creative leave-taking. Unfortunately, a growing percentage of the population in our country die in hospital rooms without having made any preparations. Making a living will, having a plan, and being prepared is a blessing and a comfort that we all are encouraged to make time for.

Pete’s partner and life companion didn’t respond to our emails, calls, or texts for several weeks. She had told us she would need to sleep for a month, but we finally decided to go regardless of whether she was ready to see us or not, and drove the 5 hours to spend the weekend with her. She needed to pour out so we sat and listened over lunch at their favorite spot on the river. She had hardly touched her food. Then over a beer outside in their garden we heard the stories of his last few days, and we laughed and cried together.

People don’t always know how to grieve. It can get the best of us, and take away all desire to keep on living. She needed us, just as we needed her.  “You’re Pete’s family. When I look at you, I see him. You’re the only ones I can really talk to. I know you’ll understand.” When we rolled up our sleeves to clean up the house, there was a lightness in the air that was palpable. Each shake of a carpet, each load of stuff to recycle, and each trip to the dump made the air cleaner and brighter. It was her place now, and we were shaking the memories out of hiding, into the light.

 

 

 

 

In conclusion:

At the conference I heard for the first time about Death Cafes and the Death Positive Movement.We talked about Irish wakes and ‘homegoing celebrations’ and were introduced to NODA (no one dies alone) and the Conversation Project which encourages people to talk about death in advance with their loved ones. Doulas provide a needed complement to hospice and chaplain work. I felt the training was both broader and more specific at the same time, and definitely more family-centered.  We need a shift in our cultural consciousness about the very natural process of dying. And that’s a process too.

When I got home to my little place in Bridgeport, I got many inspirations about my death. I never liked the idea of burial – not just because I don’t like small, dark, confined spaces! – but because we all tend to move so much. I don’t want to be buried somewhere that no one can get to easily, and often ignored. On the other hand, cremation was not encouraged by my faith group, and I never liked the idea of my ashes being sprinkled over the ocean for example. Where would people go to find me?  I don’t mind to go back to the earth in the form of ashes, but I want to be buried beneath one of my favorite trees here in Seaside Park. My daughter will know which one it is, and she will be able to come sit under those lovely branches and listen to me talking to her about this and that, as I like to do. She’ll be able to look out at the sea and remember how much of my heart is invested there along the shore, among the rocks we climbed, and with each gleaming gull that glides past overhead. “Maybe Mom spoke to that one!”

I’ll be leaving one life, and coming home to another.

Robin Debacker

August, 2017

 

 

 

 

 

 

 

 

 

 

 

 

I’m An Adult Child – part 1

Living life from a basis of fear

Comparing myself to others

Never thinking it was safe to play

Surrounded by people who didn’t respect me or treat me well

Afraid of authority figures and tending to isolate myself

Frightened by angry people and any personal criticism

Feeling overly responsible for others as a way to avoid looking at my own faults

Being my own Harsh, Harsher, and Harshest judge and critic

Feeling tremendously guilty when I stand up for myself instead of giving in to others

Addicted to excitement in its myriad forms

Stuffing feelings, and not even able to remember or feel what they are now

Continuing to live with sick people who were never there emotionally for me in order not to be abandoned.

Yes, Yes, Yes, and Yes. I recognize myself when I read the Laundry List –  14 Traits of an Adult Child. And when I introduce myself at an ACA meeting, ‘Hi, I’m Robin, an adult child,” I’m embracing a reality I have always lived and struggled to hide and accept.

The Red Book has 648 pages, so it can’t be summed up in a paragraph here. What I’d like to do is offer a few bits and pieces as I work through them. Right now I’m working on reparenting myself: learning to be sensitive to my needs and my background experience. For me, I need a lot of validation – that my feelings make sense given my family history.

I encourage myself in many ways. For example, I remind myself when I start to slip into that spiral of self-doubt and condemnation that I’m actually doing a pretty good job; that I am not a bad person; that I have something valuable to share with the world. I repeat Lady Gaga’s words to my hurting hating Self, “You’re on the right track, baby! God makes no mistakes.”

I also tell myself that growth doesn’t happen in the blink of an eye. Patience, my dear! I sing songs with empowering messages, take time at the water’s edge, and share my experiences with trusted friends both in and out of the program.

And like Joe Walsh, I’m taking it One Day at a Time.

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Adult Children

ACA is a 12-Step program for Adult Children of Alcoholic/Dysfunctional Families. I joined a local group in January 2016. We meet once a week for about 75 minutes, and we’re all women.  When I first walked in, I felt I was home. Part of it was the warmth of the room’s furnishings: sofas, big comfy chairs, big windows and a lot of light. Part of it was that the women there had been meeting for 25 years, and there was a peaceful practice of acceptance in place that I could feel immediately. But really, the biggest part was that I knew on some level before even opening my mouth or hearing anyone open theirs, that this was a safe space- a place to explore and discover my Self.

The first thing that struck me about the meeting was that no one said a word while someone else was talking. There was absolutely NO CROSSTALK. I was a little uncomfortable about it. I’m used to nodding my head, saying ‘Uh-huh!’ or ‘Really?’ and making eye contact with the speaker, at the very minimum. More often, I like to give my feedback, my Two Cents. In this room, the speaker takes her turn when she’s ready, breaking the silence to say her name and be greeted. After that, no one offers any comment. We just sit and listen. And we Thank her when she’s done. That’s all. Then we return to silence.

The term ‘crosstalk’ means interrupting, referring to, commenting on, or using the contents of what another person has said during the meeting. Many ACA members come from family backgrounds where feelings and perceptions were judged as wrong or defective.  When we were growing up, no one listened to us; or they told us that our feelings were wrong. As adults, we are accustomed to taking care of other people and not taking responsibility for our own lives. In ACA we speak about our own experiences and feelings, and accept without comment what others say because it is True for Them. We work toward taking more responsibility in our lives rather than giving advice to others.

In ACA, we do not touch, hug, or attempt to comfort others when they become emotional during a meeting. If someone begins to cry or weep, we allow them to feel their feelings. We support them by refraining from touching them or interrupting their tears with something we might say. To touch or hug the person is known as ‘fixing.’ We learn to listen, which is often the greatest support of all.

I’ve come to cherish the ‘no crosstalk’ rule. It’s still a challenge for me to remain silent but I’m getting more comfortable with sitting in silence. And I have experienced first-hand how effectively freeing and validating that silence is. There is nowhere else in my experience where I can share what’s on my heart without being interrupted, interpreted, advised, judged, or in some other way verbally responded to, even positively, with questioning or other kinds of feedback. The silence of the group around me is a reward in itself, and I know I have been heard.

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Thank you for Asking!

This is not a new survey. It’s been 3 1/2 years since I completed a survey of Unificationist Sunday Services as they are experienced by various members around the world. It was my first research project. I was inspired by the qualitative research of Brene Brown (The Power of Vulnerability), and dealing with a lagging interest in attending a service 90 minutes from home. I was also frustrated that my experience and that of my husband wasn’t part of the conversation. I wanted to find out what others had to say.

Engrossed thoroughly as I was in reading the responses as they came in, the work pulled me through a tough winter in Belgium, and helped me tap into a passion I’ve had all my life: giving voice to the silent or the unheard.  Grassroots stories from the field always catch my interest. All told, I logged in over 600 hours, spanning a period of 3 months. The people who responded had something to say and were glad to be asked.

The finished survey was sent out to everyone who had participated, and then published on the Applied Unificationism blog, but that was as far as it went. This week, I went back for the first time, and realized it might be time to make the website public. For anyone out there who’s interested or involved in similar research,  I hope it is edifying and finds fertile soil in your garden as well.

buddha standard time

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I’ve been in Eastern Standard Time most of the last 10 months, except for one brief interlude back to Belgium (Central European Time) last August. Today I’m in Boston, and we had to set the clocks 1 hour ahead, and as usual, I got confused, until Joanie told me that we always Fall Back before we can Spring Forward. Nice, but who knows why we do that anyway?

Time has been weighing on me regardless, and I have been wondering how to get back into the elusive zone of Peaceful Presence. It’s not a specific place on earth, and it can be found everywhere and anywhere. Sometimes it seems to just come, and takes me by surprise, but more often it seems to go, leaving me with thoughts of the burdensome past or a worrisome future. Either way, my time, though I know it’s precious, often feels oppressive, and I feel like I’m wasting it, and running from place to place doesn’t necessarily help.

So, what do I do? Asking what’s wrong with me might not really be the right question. It’s normal that I’d be feeling less than happy about my life, when marriage hasn’t been working out very well and church hasn’t either. At 63, shouldn’t we have built something more?

While washing the linens on my daughter’s bed I spied a basket full of books on the floor. Books always find me when I need them. The Canon~ A Whirligig Tour of the Beautiful Basics of Science, by Natalie Angier. Sounds interesting. Maybe later. Life in a Shell ~ A Physiologist’s View of a Turtle, by Donald Jackson. Must be interesting for Emilie. Oh, what’s this blue book here… buddha standard time~ awakening to the infinite possibilities of now, by my old friend Lama Surya Das. He’s not old, he’s just been helping me for so long. That was the one! I picked it up and carried it out into the kitchen where Felix was meowing at the door. He’s an outdoor cat, or used to be, and he always wants to go out. I feel sorry for him. Somehow I know the feeling. Being stuck inside can feel like being in a tomb. At least it does for me. It may be warm, but there’s no life around. Everything is man-made. Everything seems dead. And I always eat too much.

I followed him down the stairs, and outside. The sun was momentarily blinding. Wow!! Felix hesitated on the doorsill, and stepped gingerly down onto the sidewalk outside the door. It was wet in places. The sun has been melting the snow all day today. Peering closely at the edge of the drift and how it’s a few centimeters from the ground, I wondered if glaciers melt in the same way. I’m sure they do. Drops of water were falling here and there from the roof above. In front of us, a few blades of last fall’s grass were showing along the edge of the brick path. Felix saw them, and bent down to nibble. I thought he would. Cats like grass, especially if they have something wrong with their digestion. He threw up yesterday morning, and I had it on my list to go find him a cat grass plant to eat. I wonder if this is the right kind of grass. Is it the chlorophyll that attracts them? Would any green grass work? In any case, he likes it.

Outside, it’s a different world. Everything is alive. The sun shining, the snow melting, birds chirping, and people moving around in their cars on the street. And that’s just the big stuff. Even the air is alive. Everything is in motion. My heart feels like it just got home, and my body and mind just got freed.

I opened the lawn chair leaning up against the house, chuckling about how I can enjoy the sun no matter where I am, and opened up the book. Felix jumped into my lap, and I felt a rush of love. Any cat that voluntarily sits on my lap gets millions of points with me. I told him so while I hugged him close. Felix doesn’t seem to purr, or show much emotion, but I had the feeling that I had won a million points with him too, just by taking him out.
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I noticed that as soon as we stepped out of the house, my spirit lifted. Like a wilted flower that gets a drink. I think Felix’s did as well. He looked like a different cat to me, moving slowly and cautiously along the edge of a 2 foot high drift, ears catching every tiny sound, body completely focused and alert. Now that looks more like a cat. Yes, and I feel more like a human too. Ahhh. The sun is warm, the air is cool, and there’s something about being surrounded by all this living stuff that’s really exhilarating. It’s waking us both up.

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I opened the book.

“Awaken to Natural Time,” it said. Exactly!
“Rediscover the multiple cycles of growth, change and decay in the natural world around you. Learn a mini-meditation or breath break to refresh yourself.”

I closed my eyes, and thought, yes, that’s exactly right. I’m outside, where the natural cycles of life are going on all around, right here outside my door. It’s all doing what it’s supposed to do. I took a breath, and felt time slow down. I’m right here, right now. The world is here with me. I don’t have to rush anywhere to catch up. Past problems are gone, future worries don’t matter. Time seems to have disappeared.

I felt the breath on my nostrils. I’m alive, thank you! This is buddha standard time.