As you answer the following questions, get your mind and heart in sync with your reality, whether you are giving or receiving care. You will not submit these answers, it’s just a way to check in with yourself. Be truthful. End of Life doulas can teach you to have and know your perspective on caring.
This audio clip from NPR is a poignant and realistic account of a young woman who makes the decision to care for her grandmother at the end of her life. It is a great example of the joy, courage, and challenges of being a caregiver.
A man’s father came to a swift end. The son didn’t have a lot of time to get his head around the fact that his father was suddenly dying.
The son called me. He told me he was angry. Exhausted by being tired and scared. Where were the professionals? The doctor? The hospice nurse? Why did he and his family have to take care of his father all by themselves?
“We don’t know what we’re doing!” he shouted in fear.
From 1000 miles away I told him, “When you go into death with your dad, when you discover yourselves in the middle of it, you will realize that your chance to care for him is a gift. Take that into your heart when you spend these last moments with your dad. That’s all you need to do, and you already know how to do it,”
He and his sister stayed with their father until he died. When he came back to town after the funeral, the son was beaming when he told me that, even though he was so very sad, indeed caring for his father had been a gift and that made his grief easier to bear.
Simply putting the focus on what is here and now can create calm that allows for profound meaning to emerge.
I developed a fondness for “Grace” through hospice. She was in a facility after a massive stroke that compromised much of her ability to speak and walk.
Her late friend and caregiver appointed her own daughter, we’ll call Diane, to be the power of attorney despite having no blood relation. Grace had no children or family left. Diane was difficult to get a hold of and never visited. By all appearances, she didn’t care.
Over the last year, I built a gradual rapport with Diane through text and it was enough to give me something to work with.
No funeral home was determined up until the last 24 hours. We were trying to contact Diane to let her know that Grace was actively dying and a decision had to be made. Finally, she responded to me and then others: she fulfilled that last responsibility at the last minute. Diane surprisingly expressed very deep sorrow and shock that this was really happening.
I sat with Grace at the bedside for about 10 hours. I sang and held her hand. I talked to her about her favorite hospice volunteer, that we finally reached Diane, and how much she was loved by the people who cared for her. I assisted the staff to reposition her tired body and kept them updated along the way. Everyone was anxious, curious, and upset. The facility staff had become her family.
About an hour before I left, I got a text from Diane that said “I’m at the door.”
I ran to the front lobby and found a woman about my age crying nearly to the point of hysterics. We hugged and I thanked her for coming. She mournfully apologized for being “such a coward about facing this”. In that moment, the only thing that mattered was that she was there. She said her goodbyes.
Grace died under the blanket of night with a hospice aide at her side, who washed and dressed her before leaving the facility. Grace was never alone. She was cared for with dignity and loving support.
The part of our humanity that lifts us out of the mind’s judgement is a gift of grace that is bestowed at the bedside of someone who is dying.
I am so grateful that we had and end of life doula for the final months of my mother’s life. Throughout the process, her first priority was my mom: they had a beautiful connection with each other and my mother was noticeably comforted by her doula’s presence, even after she was no longer able to verbally communicate. My mom had doubts and fears about death and the afterlife; over multiple visits her doula helped her to explore these doubts in a way that brought her comfort and peace.
The doula was with us for my mom’s final breaths. My mother had been hanging on for over a week without food or water. When the doula sat with her and assured her it was okay to move on, my mom was finally able to let go. I truly believe our end of life doula helped my mother — and the rest of our family — experience death with peace, dignity, and beauty.
Doulas are very attentive throughout the active dying stage. Our doula helped us to recognize the signs and give my mother comfort while offering emotional support to our family. She also helped us out in practical ways — making sure we were getting food and rest while we cared for my mom.
Although her first priority was always my mom, a huge benefit to having an EOL doula is the family support. Our doula met with our family — together and individually — to help us process and plan for my mother’s death. I especially appreciated her help with the vigil stage. With her help, we created a comforting space where we could all gather with my mother and spend her final days sharing stories, memories, and even laughter.
She also helped our family create a legacy project: we made several pillows out of a blanket that my mother had used throughout her illness, so that each family member could have a memento from that time. This is something I would not have thought to do without our EOL doula.
I would recommend an EOL doula to anyone who has a family member with a terminal illness. In addition to helping my mother experience a peaceful death the support benefited our entire family throughout my mother’s final months. I will always be grateful to her!
When my mom-in-law was dying, I was heartbroken and at the same time dealing with how to manage things. I was working with doctors, my father-in-law who was struggling, and trying to organize home care with the hospice. Having someone outside of all of this who has experience with dying was a gift.
She talked me through what dying looks like. I called her late at night when things got difficult. It turned out to be the my mom’s last night. When she died, our doula came and stayed. She is the one who told us we could bathe her, pick out clothes, spend as much time as we needed. I would not have know those things were possible. The hospice nurse came to the house, but it was the doula who explained things, and stayed with us after the nurses left.
After our mom was taken away, the doula stayed and got us talking, asking us to remember, to share our stories. She helped us think and plan a memorial service that was a celebration of life. Our family was overwhelmed with grief. Our death doula made it so we could take one step at a time without having to do all the thinking on our own.
Our doula was really amazing, and I will always be grateful for her presence through that time.
The night before a woman’s death, her daughter-in-law called me and asked if I would come in the morning so we could meet with the hospice nurse together. She was unsure about whether they were handling medications properly for their mother who was in the end stage of terminal illness. The elderly father and mother were very private people who did not want strangers in their home, and waited until just a week before the death to allow hospice care in.
When I arrived, I sensed that things had taken a turn, and as I stepped into the house, the family was distressed and in shock. Their mother had just died. Her husband sat next to her, but everyone else was in the next room. I walked over to her body, then crossed her hands over her heart. I gently closed her mouth and sat quietly with her husband. I explained to the family that death is a labor, much like childbirth is, and perhaps they would like to wash their mother’s body and dress her in some fresh clothing.
Two of the women stepped forward, and as they cared for her body, the mother’s dignity was restored, I noticed the family members were now willing to gather around her body. One of the grandsons said, “OK, this is a lot more like grandma”, while a granddaughter picked a day lily and placed it in her grandmother’s hair. The family started sharing stories about their mother. The grandfather sang his wife a song he had written for her when she was away on a trip during their courtship 64 years ago.
Sometimes all a loved one needs is permission to be an active participant in the process, to turn helplessness into empowerment.
I was recently contacted by a friend of mine whose parents lived in a continuum of care facility in.
His dad was on Hospice and he wanted me to provide extra support as his dad’s health declined. I met with the whole family. A week later, I was asked to return to the bedside vigil so the wife could take a much needed break.
While there, the son called from out of town. I held the phone to his dad’s ear so he could hear his son say he loved him one last time. I noticed a change in the father’s breathing so I texted his wife to come back quickly.
I softly sang Amazing Grace as she kissed her husband of 61 years goodbye. It was a beautiful life and love story with a peace filled and merciful ending. I waited with the grieving wife until her daughter arrived. They were deeply grateful. I stayed until the funeral home came for transport.
The deceased was a Veteran and I walked behind his flag draped body with my singing bowl. I shared this honorable exit with his friends and family. It gave them great comfort. As an End of Life Doula, it is my honor and great privilege to stand in the gaps between the medical needs, family dynamics and availability, and the wishes of the dying. It is sacred.
Elevating the senses and the heart to an inspired awareness, and trusting that what comes is blessed, be it a song, a voice, or a touch. These simple actions create openings into the final moments of someone’s life where family members can express their love and gratitude.
Over the years, I’ve created numerous audio keepsakes by interviewing patients one on one or facilitating conversations among patients and their loved ones. The reasons for participating in a “lasting conversation” vary from person to person. I’ve had patients who wanted to share advice for not-yet-born grandchildren, patients who wanted to give loved ones a tangible assurance that they were ready to die and patients who wanted to leave their loved ones a recording of their favorite childhood stories told in their voice.
Like the life stories they reflect, each recording is one-of-a-kind. There’s no way to sum up a person’s life in a 60-minute conversation. Instead, my hope is to capture a sense of the person through their memories, thoughts and stories.
Helping patients shape their legacies is one of my favorite ways to support and serve people who are dying.