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.
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.
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.
Pete and Emilie
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.
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.