How An End of Life Doula Can Serve You
Have you thought about how you would want yourself or a loved one to experience death?
I imagine that may not be a question you ask yourself every day.
I have shared in my various blogs about my experience with my dear family member, Steven, during the last days of his life and how I instinctively served as his end of life doula. I have always known the impact that experience had on me and the meaning I gained from it, but it was not until I met Henry Fersko-Weiss that I fully realized what I had done for Steven and the family.
Henry is the Executive Director of the International End of Life Doula Association (INELDA) and has served as a doula and a teacher of doulas for over 14 years. I had the honor of being trained by him as a part of the Art of Dying Institute’s Integrative Thanatology Certificate Program that I am attending.
As Henry moved through the training and shared stories and experiences, I realized exactly the role I played for Steven.
Yes, I helped care physically for Steven. I gave him morphine and medications. I tested his oxygen level and blood pressure. I soothed his face with a cool, damp cloth. I helped bathe him and reposition his heavy body. And I recognized when the end was approaching and arranged for those who wanted to be there with him to be in the room.
But I did so much more. By spending time with him over the years and simply getting to know who he was, I had learned what really mattered to Steven and how he wanted to die. It had been shared with me how much he enjoyed listening to calming music, so I always ensured his favorite music was playing. I sat with him and talked to him to soothe his fears, concerns, and worries.
I even started collecting his eyelashes and shared with his wife, Melanie, what I was doing and that she and his beautiful children could perhaps one day use the lashes to blow wishes into the wind.
There are two things I did for him and the family that stand out the most for me and fill my heart with so much love.
By knowing Steven, I knew the deep love he had for his family and desire to be with them. He wanted to be in the thick of things and loved knowing everyone was safe and well. During his last days, I would wake him in the night to give him morphine. The anguishing pain that accompanies glioblastoma brain cancer is untouchable, but we did all we could to keep Steven as comfortable as possible. It was important to wake him during the night in order to stay as much ahead of the pain as possible. Often, he would struggle to settle back to sleep after the medication process. So, I would “walk him through the house”.
I would mention every person that had been in the home that day. “Steven, Tracy is now home and resting in her bed. Jay is now home and resting in his bed.” And so on. Then, I would tell him where everyone was in the house. “Steven, Melanie is upstairs with your girls. They are resting in bed. Evan is in his bed sleeping. Your mother is in the guest room sleeping. Grant is resting. Everyone is resting. You can rest now.” Every time Steven struggled to settle, I would “walk him through the house”.
There was one night Steven was not struggling and was quickly settling on his own, so it did not occur to me to share with him where everyone was. As he was drifting off, he said to me “Sophia, where is everyone in the house?” My heart and face lit up with a smile! And, I walked him through the house.
The other moment that made the biggest impact on me was my experience with Steven’s youngest child, Elli.
She and I had created quite the routine. Elli would come in every morning, pile in the bed with me, and we would talk about how her dad was doing. She would help the hospice nurse and me take Steven’s blood pressure and oxygen level. And she would help me carefully massage Steven’s legs to keep his blood circulating as much as possible. Oh, this beautiful girl!
There was one morning that was a bit different. I had learned that Elli was unsure if she wanted to go to her father’s funeral. Thankfully instead of reacting, the family had agreed that we should let her work through what she was feeling. Everyone, no matter their age, needs to be able to work through what they are feeling. And often, our feelings are there to lead us to a deeper need/healing.
“I am never upset for the reason I think.” ~ A Course in Miracles
That morning as she and I lie in the bed next to her father’s hospital bed, I mentioned to her that I understood she may not want to go to the funeral and asked if she would like to talk about it with me. What transpired next continues to bless my heart beyond measure.
Elli asked me, “If you were 10 years old and your father was dying, what would you do?” Without flinching and fully honoring this beautiful, brave girl, I responded, “Well, your father has fought so bravely because he doesn’t want to leave you. Unfortunately, he doesn’t have a choice. So, if it was me, I would want to go and honor him.”
We then talked about the fact she did not want to cry in front of others and how she felt like people would expect her to. I responded that everyone would be there to support her, and she was not obligated to act any certain way to anyone. She simply had to be herself.
She then also shared with me that she was not sure what to wear. This beautiful, girly girl proceeded to tell me that she did not want to wear black because her father would no longer be suffering and in pain. Elli then asked me, “I would like to go shopping, and I would like for you to take me…just me and you. Do you think that would be okay?” I told her I thought I could arrange such a thing with her mom.
And then, OH then, this beautiful child said to me, “And it’s not that I want you to buy anything for me. I have money. I will pay for it myself.”
Until that moment, I had never felt more love flood through me. I felt my heart expand and love radiate out for this beautiful girl, Steven, and the family.
The next day, Elli and I went shopping. I told Steven that his precious girl and I were going out and would be right back. My fear was that he would pass while we were gone, and I did not want that for Elli.
So, she and I set out on our mission. Elli was so on point…she did not stop to look at anything extra. She was focused on finding a dress that was fitting for the occasion. We found the most beautiful blue dress. We complimented it with new tights and new shoes. When we were in line to purchase her items, I asked her if I might pay half as a gift to her, and she smiled at me and said yes. I knew it was important for her to pay for part of it...it was a moment for her to honor her father.
On the drive home, Elli asked me if I thought it would be okay if she put on her blue dress to show Steven and Melanie. I said emphatically, “Yes, that is a wonderful idea!” When we got home, I had the honor of watching that dear child enthusiastically change into her dress, walk into the room where Steven was resting and Melanie stood waiting, and show her father the dress she bought to honor him.
I watched Elli radiate joy and pure love.
It is no surprise that children struggle with the death of a parent. They often become angry because they do not understand that their parent does not have a choice, and they feel abandoned. I unknowingly helped a beautiful child understand that her father was not choosing to leave her…he was not abandoning her. Unfortunately, he did not have a choice.
And that wise, beautiful child taught me so much!
To walk with another on their journey is truly an honor and a privilege. And it was truly an honor and privilege to serve Steven and the family the way I did...to walk with him during the last days of his life
As Henry shared during the end of life doula training, the dying often feel like they are just waiting for their last breath...that their life has lost its meaning. Often, fear and anxiety rush in.
Yet, we are designed to die. It is a natural part of life. And we are all going to experience it.
So, what if we transform the way we die? What if you had someone there to help remove the fear of the unknown and walk with you and your family through the process?
Henry shared the story of Greg Torso, a 42-year-old man who was dying, and his mother. Ms. Torso was very concerned about witnessing her son’s death because she had no idea what it would be like. She wanted to be there for him but was also afraid. Henry and his team worked with Ms. Torso and Greg to help navigate this beautiful mother and her precious son through his death. Because of Henry’s guidance, “Ms. Torso was coached and consoled through the final days and hours of her son's life.” Her experience left her with a feeling of euphoria. You can learn more about Ms. Torso’s story and experience as well as the benefits of working with an end of life doula in this NY Times article.
As an end of life doula, I can help you and your family move through the dying process. Together, we can move the conversation beyond just comfort care to help you and your loved ones find more meaning in the process. I can offer support where it is needed, explain the dying process, calm any situations that arise, remove any negative energy that may surface, and allow you and your family to be more present in the experience. If there are any barriers, I can help gently to open the doors of communication. I can help you and your family plan how you want things to be. We will identify what matters most to all of you.
“Death is not waiting for us at the end of a long road. Death is always with us, in the marrow of every passing moment. She is the secret teacher hiding in plain sight, helping us to discover what matters most.” ~ Frank Ostaseski
What do you want your family to remember about your life? How do you want to experience this part of your natural journey? How do you want to connect with those that matter most to you? What can your family do to help you feel loved, supported, and connected to them?
And I will work with you and your family during the dying process to ensure final wishes are met.
You can actually go through this process with me even if you are fully healthy. I am currently working with a client who has a fear of dying young due to her father’s untimely death when she was a teenager. We are working through her fears by mapping out how she would want to be remembered if she did die young.
And, I also want to serve after death has occurred. I am purposefully building a life coach practice with a special focus on death and dying. My sole focus is helping individuals move through and fully connect with life experiences in order to learn what those experiences mean for them. So, I also work with individuals who need to move through grief due to the loss of a loved one.
Death is a part of life. May we honor the end of life the same way we honor the beginning.
"Grief is not a disorder or a sign of weakness. It is an emotional, physical, and spiritual necessity, the price you pay for love. The only cure for grief is to grieve." ~ Earl Grollman
(Please note: In my writing, some names have been changed to protect loved ones. I share my experiences and stories while honoring the privacy of those dear to my heart.)