I learned what a death doula was years ago when the manager of our hospice and I had a conversation about the need for additional help in the home of a dying patient. She explained that death doulas are trained to assist the patient and family through the dying process. The hospice program although an incredible service, cannot be available all the time. Hence the need for a death doula, aka death midwife, or end of life doula.

For two weeks after my second son was born at home with a midwife, I had a birth doula. The birth doula offered non-medical care and support while I once again became mom to a newborn. It was a very positive and beneficial experience and one I would recommend. 

“Doula” is an ancient Greek word meaning “a woman who serves.” Today “doula” refers to anyone in a non-medical role, trained specifically to support a person mentally, physically, emotionally and holistically at the greatest events of their lives, birth and death.

My journey to become an end of life doula as well as a hospice nurse began after Christmas 1995 when my grandpa found out he had metastatic lung cancer with a grim prognosis. Other members in my family were not comfortable dealing with grandpa’s illness. My twin sister Shawn and I spent a disheartening day looking at nursing homes and I knew I could not put him in one. Grandpa Bill helped raise us after our dad died. Now that he knew he was dying his only wish was to be home with family.

I spoke with my husband Bart and we agreed to bring him to our farm in Metamora with hospice care. I was not a nurse at the time. I was mother to a 3 year old and 8-week old infant, also a wife who co-owned and operated our landscaping business. I had never experienced a home death or even knew what hospice was, but it became clear I was on a crash course to find out.

The ambulance brought grandpa from the hospital and we were soon greeted by two members of the hospice team, which included a nurse named Blanche. 

As the nurse assessed grandpa in his bedroom (formerly my office), I sat with Truman on the floor of the living room as he played with his blocks. We talked about the situation and Truman said with certainty: “Grandpa is sick now but he will get better, just like I did when I was sick.” Truman was referring to an asthma attack he had two months earlier that ended with him staying overnight in the hospital.

It broke my heart but I knew I had to be honest with him. Although he was only three he was a very precocious child, and wise beyond his years. 

The words nearly caught in my throat as I said gently: “Oh no honey, grandpa will not get better. He is very ill, which is why we brought him home to be with us. Eventually at some point, he will die.”

I was horrified as Truman quickly jumped up and faster than I could reach him, he ran into grandpa’s room visibly upset and loudly protesting: “but grandpa I don’t want you to die, grandpa please don’t die!” 

I made it to the doorway in time to see Nurse Blanche without missing a beat, turned to my son and matter of factly replied: “but it doesn’t hurt!” 

Truman said “oh!” and immediately became calm, walked out of the room and went back to playing with his blocks as if the response she gave was the most natural, normal thing in the world. I was relieved and instantly realized what an incredible gift nurse Blanche and the hospice was during grandpa’s final days.

I cooked dinner with all his favorites the second day he was home, he ate very little. Then he held baby Bowie for a while which brought him comfort. Later that night grandpa woke up in excruciating pain. The hospice adjusted his medications and increased his morphine. He was no longer able to swallow.

Grandpa Bill declined rapidly. It was as if he had been waiting for someone to get him out of the hospital and bring him home to be with family. Then not wanting to impose, make a quick exit. 

I rode a rollercoaster of emotions over the days of his dying, things were progressing rapidly. Time flew by as I monitored my grandpa and gave him medicine, moistened his lips, attended to his needs and simultaneously took care of my family.

He was becoming less responsive. Dr. Nancy Brinker came out on the fourth day to assess him and said it wouldn’t be much longer. It was very blustery that afternoon as I took Truman out for a walk around our barns. I exclaimed: “Grandpa is going to have a windy ride to heaven tonight!”  to prepare my son and also myself for what was to come.

Our wonderful neighbors brought over an array of home cooked food. Family came out to visit with grandpa. My nephew gently washed his face with a cool cloth. The hospice aide came to change his linen and bathe him. She was so tender and reverent with him. After she finished I watched from the doorway as she said a silent prayer at his bedside. 

Grandpa was comatose, pale, eyes half open and mouth agape with “terminal congestion” but comfortable. He had the look of someone who was very close to death. The gusts of wind continued as darkness came. Grandpa was hanging on through slow raspy breaths, the room heavy with emotion. Family members were in and out with some at grandpa’s bedside. 

The phone rang in the other room and I picked up to hear a nurse friend’s soothing voice on the line as she said: “Shelley, sometimes they need our permission to relax and let go. You may have to tell him that it’s okay for him to die.” 

As I hung up the phone I knew this was no coincidence. This was an angel speaking through my friend who called in that moment to give instructions on what needed to be done next. 

Trying to remain calm while inwardly nervous, I went in and sat on the edge of his bed. He hadn’t spoken in a long while so I took his hands gently in mine, leaned in and said: “Grandpa we are all here and we love you very much. Any time you are ready it is okay to let go. We will be alright.” 

That was exactly what he needed to hear. My grandpa opened his eyes for the first time in days and looked deeply into mine. I felt energy radiating from him as he kept repeating, nearly inaudibly: “I love you. I love you. I love you.” His eyes were beautiful, sparkling brown and full of light. 

Bart quickly came into the room with little Truman by the hand and Truman looked up from the bedside, waved and enthusiastically said: “Goodbye grandpa Bill!” And as his spirit rushed up through me my grandpa died with a smile on his face!

It was a revelation, an AHA moment for me as I realized and kept repeating: “death is just like birth, but in reverse!” Bowie had been born at our home with a midwife 8 weeks earlier. And here we were in our home again helping grandpa through his labor to exit this earthly life. Next to birthing my two sons, grandpa’s death was the most profoundly spiritual experience I had ever been privileged to witness. And the reason I became a hospice nurse.

We make plans as dying can last hours, days, weeks or months. Then in an instant our loved one leaves their body and this world behind. Of course those of us left are filled with grief and sorrow. All of the preparation and anticipation was leading to this threshold - the edge, the veil between life and whatever you believe happens next. That is what we hold onto and gives us comfort when our loved ones depart. Knowing they made it through their earthly journey to another place and that they are at peace.

Let me be perfectly clear, dying is not all rainbows and unicorns. It is incredibly sad for the ones left behind and horrifically tragic when death happens suddenly, violently, or to a young person, infant or child. It is not necessarily pretty either. Much like birth, death can be a messy affair. With bodily fluids, primal noises, sounds and visuals that are not experienced at any other time in one’s life.

Yet in both instances it is the comfortable, peaceful and safe transition that we strive for. In birth it is anticipation of that first breath. The cry of the newborn, the beauty and magic of new life. 

In death it is the last breath. The wisp of a smile, the fleetingness of the spirit rushing out of the body. The calm reverence afterwards when we know our loved one has made it to the other side and is no longer suffering.

The wonder and amazement of the spirit disengaging from the physical body is truly one of life’s miracles. 

If we can consciously be in the present moment, to look beyond our grief and our preconceived notions of the gruesomeness of death, we may notice many wondrous things that take place.

The people who show up or call at just the right time. The dying person choosing the exact moment and specific people at bedside at the time of their death. Or those who choose to die the minute they are alone when their loved ones all leave the room. 

Every death is unique, as is every birth.

There is beauty and reverence in the care and tenderness we show the body after the spirit has left. The body, this vessel that once held the soul of our loved one and carried them through their earthly existence. Life and death are two sides of the same coin. Where one goes, the other inevitably must follow.

This is the reason I am now an end of life doula. I choose and feel honored to assist people through the transitional process of death and dying. My goal is to help patients and families become more comfortable with death, to meet them where they are, to give support and hopefully to help them experience dying in a new light.

Blessings,

Shelley