as a Palliative Care and End-of-Life Doula (non-medical)
The seed of my calling to serve as end-of-life doula
By Christine Dehlinger
I began wondering about and questioning the way we die in our culture when my mother died from cancer at the age of 66. After my father died 25 years later, I felt drawn to volunteer with hospice, but didn’t pursue it because I was working full-time.
In 2016 I was fired from my job because new company owners eliminated my position. I was then liberated to follow my calling.
I discovered that there could be much more than volunteering for hospice, as I learned in 2016 about the new end-of-life doula movement pioneered by hospice social worker Henry Fersko-Weiss. Coincidentally, Henry was guiding training in Madison, Wisconsin in a couple of months, one of only six classes that he presented that year. It was a no-brainer to register for the class and move from there. I have received their certificate of training. Since then INELDA has expanded training all over the United States which produces 30-50 trained new EOLDs each month that the training is offered.
I have chosen not to pursue the arduous process to become certified with INELDA because, while it is a comprehensive and thorough process, that is *only* INELDA's "certification." Most important: There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds the liability or provides monitoring for end-of-life doulas.
Instead I chose to take training with the University of Vermont and have earned their "End-of-Life Doula Professional Certificate." https://learn.uvm.edu/program/end-of-life-doula-at-uvm/end-of-life-doula-certificate/
In addition, I am a member of the National End-of-Life Doula Alliance (NEDA). https://www.nedalliance.org/
I have many hours of service as a hospice volunteer, and will continue. I am hanging out my shingle to serve those at end-of-life, and to serve those who care for the dying. This is part of my guided, spiritual path.
March 1989. Mother’s death.
My husband and I had just returned home from his birthday dinner party with friends, when I received “the call.” Mom had been suffering from advanced colon cancer for more than a year, so it wasn’t unexpected.
“Your mother’s body is starting to shut down,” my dad said.
“Can’t they do anything?” I asked, in between shortness of breath and tears.
“No, Chris. It’s time.” was my dad’s response.
Knowing that I was too distraught to drive that night, the next morning I tried to rush to my hometown, wishing for the trip in my car to be much quicker than its usual two hours. It wasn’t.
Arriving, I dashed into the hospital and found my mother sitting up in her bed.
We conversed a bit, but small talk is silly at a time like that.
With my almost-2-year-old daughter running around the hospital room, I told Mom that I sure didn’t understand how she had found the patience and energy to raise six kids. “Did I have a choice?” she replied, not at all bitterly but realistically.
And then, Mom was adamant about not wanting her friend Patricia to visit. “She talks too much! She’s always talked too much! Besides, she and I weren’t really such good friends as she likes to think. I was a good sport because Ron [Pat’s husband] and your dad were such good friends.”
Wow. Two truths about my mother that I hadn’t known before. I wondered why we had never talked about those things.
My toddler was restless, energetic, and wreaking havoc, as toddlers do, so I left, promising to return in a couple of hours after toddler’s father arrived and could take over the parental duty.
I returned, alone, early that evening, and Mom was no longer sitting up. Dad told me that he and Mom had a “very good talk” that afternoon about a lot of things, personal and medical, and he knew that she was at peace with what they had discussed.
Dad asked my sister Mary and I to stay the night so that Mom wouldn’t be alone until he returned the next morning. My two brothers would be arriving soon from their homes in Utah and Colorado.
Mary and I sat vigil (I now know the term for it) with our dying mother. Mom was by then unresponsive, but we intuitively knew that she knew we were there. We held hands with her and hugged her, took turns swabbing her dry mouth, observed how her breathing changed, and freaked out when there was a long pause between breaths. “Was that the last one?” we wondered each time. It wasn’t.
The nurses were very kind and respectful, but still, it was a hospital, with its bright lights, nighttime activities and many noises, both human and technology.
Our parents had agreed that there were to be no heroic medical measures, no tubes or breathing machines. Mom should be allowed to die peacefully with no invasive medical procedures.
It was the longest night of my life, much, much longer than the one I spent laboring with the birth of our daughter.
Mary and I sensed that Mom was simply waiting for her husband to return in the morning so she could say “goodbye.” We were right.
When Dad returned, Mary and I went home to nap, not knowing how much longer the dying process would be and how much more support we would need to give, or how much sleep we would need to be in presence.
Sure enough, with Dad there, it didn’t take Mom long to transition, but not before she waved “bye-bye” to my daughter, her only grandchild.
I returned to the hospital room after the phone call about Mom’s death, and it was devoid of any of Mom’s presence, not just her physical body. The room had been tidied and clean, sterile again, with no sign left that a spirit had passed not long ago.
I was grateful that I had the opportunity the night before to tell my mother how much she was loved by me, and her entire family. To thank her. To share caring and comfort with her. Just to be in presence.
After the experience that night, Mary and I have been blessed to share an even stronger sisterly bond than we had.
During the next few weeks, in my most intense grieving, I had many memories of Mom’s end of life.
I recalled a time several months earlier. My mother had been on regular chemotherapy treatment, which made her very tired, weak, and with no appetite. Upon learning that my brothers would soon visit from their homes in the Rocky Mountains, Mom begged the doctors to let her take a break from the chemo so she could feel better during the visit. The doctors absolutely refused.
My mother had very poor quality of life at the end, because the doctors had been taught to never quit trying to save the life, to do whatever it took.
I also remembered a time, late one evening, when Mom and I were alone in the kitchen. I asked her “Mom, why aren’t you fighting this?” She replied in a much louder voice than she normally used in those days: “Because I don’t want to fight it! It is going to win no matter what I do or think. Let me go peacefully without that false fight.”
I don’t know how I could have considered that statement as Mom giving up, as people often do regarding people with cancer, rather than the statement of courage, dignity, and acceptance of death that it really was.
Seed planted. There must be a better way to die.
Mid-November 2014. Father’s demise.
At the age of 90 (just a few months after his big birthday bash), although very active, in good health and cognitively alert, Dad had some dizziness and took a few falls. He was getting weak and was not eating well. Well, he was eating, in a way, but actually “starving” himself as he attempted to reduce his cholesterol levels based on his doctor’s recommendations.
We knew of one of his falls because his brother came to visit and found Dad in the middle of the kitchen floor, unable to get up for several hours. We knew of another because it happened during practice with the band that he played with as a musician and vocalist, when he fell off his drum stool. There were probably more falls than he told us about.
And there was the time he gently drove his car into the garage wall. Not a lot of damage, and no injury, but it was a sign for all of us. We were grateful that nothing more serious had happened while he was actually on the road.
Neither me, nor any of my siblings, was in a position or had the ability to move in with him, or let him move in with us, and care for him. So we knew that there were decisions to make, but we wanted Dad to make them.
He could only continue to live alone in his apartment if we got a medical alert alarm system. But would that be enough? How would that help him reclaim his strength to continue his active life? He needed physical therapy for that, and he was enthusiastic, willing to work hard at it.
To that end, he had the choice to move into assisted living, where he could have physical therapy a few times a week to increase strength, and have someone check in with him every once in awhile. Or, he could (hopefully-temporarily) live in a nursing home where he could have physical therapy almost every day.
We were quite surprised when he chose the nursing home, because he had always been adamant about never, ever wanting to be in a nursing home. (Sidebar) But he was determined to do what it took to get back his life.
Dad was a downhill snow skier for almost all of his life, since childhood. He served in the U.S. Army as part of the esteemed 10th Mountain Division, which “took back” Riva Ridge in Italy from the Germans, and in effect, was a turning point in WW2. But he never talked about it.
He skied well into his late 70s, after having both of his knees replaced so he could continue to ski. But it came to a point where he decided to quit skiing, not because he couldn’t, but because he thought that if he took a fall, as all skiers do, that he might have a physical injury that would require a stay in a nursing home.
After a couple of weeks, it became clear to all of us, Dad and my sibs alike, that getting “better” was not going to happen, as he went more and more into physical decline.
First, he could no longer do the physical therapy, even with his strong intention. Then there was the incontinence, when he could no longer get to the bathroom soon enough.
He was, though, lucid and had full cognitive capabilities, so he was able to tell us all about his meager finances, what he wanted for a funeral and disposition of his body.
“I don’t want my funeral at [my parish] because I can’t stand that priest there!”
He decided that no feeding tubes were allowed, or any other medical intervention as he came closer to death. We made sure that we had everything covered that wasn’t included in the Living Will that I had prodded him to complete many years earlier.
Always having been a picky eater, he hated the food at the nursing home, and eventually he not only lost his appetite to eat, but as his decline progressed (oxymoron?), he had great difficulty swallowing.
Always a gregarious person, Dad lost the desire to interact with others at the nursing home, and eventually he had physical difficulty talking.
Always a private and self-assured person, he came to understand that he had to be helped by aides from bed to chair and back, and before he stopped eating altogether, he allowed me to feed him. All this done with the great dignity that he always showed.
He recognized his decline and soon-to-be death.
I visited as often as I could, usually for long weekends, and I have many wonderful memories of our time together then. We would sit and talk for as long as he could, and I had the opportunity to express many things. Often, though, we just sat there, in presence with each other.
“Thank you for passing on the creative genes, Dad!”
“I’m glad you didn’t waste them, Christine.”
“Thank you for being “daddy” to this “daddy’s girl.”
A big smile of love.
Sitting close on a cloudy afternoon, face-to-face, four hands clasped, foreheads touching.
“Help me, Christine.”
“That’s not legal, Dad.”
(I later learned that he also said this to my sister, the one who sat vigil with me during Mom’s dying process. She answered him the same way.)
“Are you afraid, Dad?”
“Why should I be afraid?”
He, a practicing Catholic his entire life, with its promises of fire and brimstone, heaven and hell, was not afraid of death at all. It amazed me.
Dad died in his sleep, alone, still at the nursing home, one night in mid-December. Staff at the nursing home never notified us that the end might be near, although I know now that there are many signs.
I was not in presence as he took his last breath, but I take comfort in knowing that he was at peace, because of our conversations near the end, and because of who he was.
Seed takes root. There must be a better way to die.
Edited by George Hesselberg
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