A Good Death: My Mother’s Journey Of Intentional Dying

 

By Kate O’Connor

 

This is the story of a suicide. This is the story of an extraordinary act of will, courage and selflessness. It depends on your point of view. But since I am the one telling the story, I will say that it’s all a matter of semantics… and beside the point. How can we narrowly define an experience that is so exquisitely human, so intensely personal yet, somehow, universal? This is the story of my mother’s death, and it is my story too. We walked it together.

 

DeathThe cause of death listed on my mother’s Death Certificate is inflammatory heart disease, and that is true. But that’s only one perspective. From another angle, my mother chose her death and met it with equanimity. She was done … weary of suffering, of having unwanted medical procedures thrust upon her, of carrying on simply because it was expected of her.

 

At the age of 83, Mom had spinal stenosis, fused vertebrae from a fracture, arthritis and two knee replacements that had left her with kneecaps the size of grapefruits, all of which made simple movements difficult and painful. She was a breast cancer survivor. Yes, she had inflammatory heart disease, arrhythmia and a pacemaker—a measure recommended after she had a momentary coronary arrest—that she had initially refused, but finally agreed to under pressure from family members. She relied on oxygen tanks to breathe and had sleep apnea. These ailments qualified her for hospice care, since she had an overall prognosis of less than a year to live. To Mom’s way of thinking, it was a clear message that her time was drawing to a close. If only the people around her would let her go.

 

We first discussed her desire to “let nature take its course” on a mild afternoon in early spring as I was driving her to an appointment with her cardiologist. A month earlier, she had been whisked from this doctor’s office to a hospital because her oxygen levels were low. She had protested, but was taken by ambulance, nonetheless. Once there, she attempted to refuse some of the treatments that were prescribed for her, only to be told that, if she did, Medicare might not cover her stay. Ever practical in money matters, she acquiesced, but upon release she began to explore her options.

 

On that spring day, she told me that she had decided to make the hospice doctor her primary medical provider, to go off her life-sustaining medications and to decline any other medical treatment aside from palliative care and pain management. Then she asked me the most difficult question of my life.

 

“Will you support me in this? I need to know that you’ll be there with me.” I pulled the car over to the side of the road. It took a moment to grasp what she was saying to me. I took a deep breath. “Mom, you have plenty of time left to you. Maybe you’re just depressed,” I suggested. “Maybe some medication would help?” She looked at me with great tenderness. “I’m not depressed,” she said, absolutely calm and clear. “I’m tired… and I’m ready to go.”

 

It all felt surreal. Some part of me simply couldn’t bear the idea of losing my Mommy. But this woman was also my best friend, and I felt bound to honor her wishes. Another deep breath. “Yes, Mom,” I answered. “I will. I’ll be with you all the way. Don’t be afraid.” “Don’t worry… I’m not afraid.” And with that, my mother began her journey of conscious and intentional dying.

 

I wasn’t particularly surprised. Since my father’s death several years earlier, Mom had been giving me hints. She had nursed her husband of fifty years through over a decade of protracted illnesses, respecting his insistence that any and every medical option be employed to extend his life. His constant and dutiful caregiver, she had kept him going—maintaining his life became her life.

 

This was not what she wanted for herself—to be completely dependant on others. With her body failing her and her pain levels increasing, she had cleared out a half-century’s accumulated possessions, sold the family home and moved into an assisted-living facility. Still fiercely independent, she felt that all she really had left intact was her sharp intellect. The drugs that eased her suffering were clouding her mind, she told me, so she often chose to forgo them and deal with the pain. She needed to put her affairs in order before leaving.

 

Mom already had a DNR (Do Not Resuscitate) order prominently displayed in her private room at the facility. Before announcing her intentions to me, she had put an Advance Directive in place that forbade any heroic life support measures, including nutrition or hydration. She was well aware that, under Federal law, an individual couldn’t be forced to eat or drink against her will.

 

The Directive gave me Medical Power of Attorney in only two matters, and only if she became incapable of making her own decisions: I could determine if and when it was time to move her to an in-patient hospice facility and I could authorize palliative and pain medications. I could not override any portion of her Directive. Legally, she had established that this was entirely her decision, made in full awareness of the consequences.

 

Together, we reviewed her Will and streamlined her financial matters, liquidating her modest stock holdings into a TOD (Transfer on Death) brokerage account with her three children and her estate as beneficiaries, leaving sufficient funds in the estate account to cover her final expenses. She made some charitable donations and gifts and instructed me regarding others to be made after she was gone. As each task was accomplished, she ticked it off her list in the little notebook she kept close at hand.

 

Just before Easter, I joined her for what she called the “Last Supper” at the assisted-living facility. She ate dessert first. That night, and from that point on, she refused food and water. As the days wore on, she would occasionally nibble on saltine crackers to stave off nausea and melt ice chips in her mouth for moisture. She unplugged her telephone and instructed the staff not to disturb her. She waited—patient and determined.

 

Understandably, this behavior caused great concern to the administration of the facility, but after conferring with me and the hospice team, and reviewing the legal considerations, they compassionately agreed to let her remain in her room, amid her few treasured possessions, as long as possible—providing it did not create disturbance or distress for the other residents.

 

The first week was quite placid. Although she began to feel a bit weak, Mom was extremely lucid. Her spirits were good and she was willing to accept some pain medications when they were offered. We talked for hours, reminiscing about the good times and sharing family stories. She told me that she was at peace; that she felt that my siblings and I had good, established lives. She was gratified that she could leave each of us with a small inheritance to “give you a leg up” rather than spending her resources on her long-term care as she continued to decline. She spoke of my father and the other loved ones that she missed so keenly and her eagerness to “be with them again.” And she looked forward to being pain-free.

 

I didn’t sense any fear in her. Her real fear, she said, was that she would die alone—surrounded by tubes and wires and beeping machines—in panic and agony. It would have been ideal, she told me, if the sleep apnea and her heart conditions would have taken her as she slumbered. But she didn’t want to risk it. This was far too important to be left to chance.

 

Over the next few days, Mom entered a liminal place where her attention began to drift and she would interact with people who were invisible to the hospice caregivers and me. She was entering into the phase of dying known as “terminal restlessness” which often involves physical agitation and hallucinations. Hospice had assigned critical care nurses to stay in her room with her round-the-clock, allowing me to go home and rest for a few hours, but after we endured a particularly challenging episode—which subsided only after administration of Ativan to calm her into sleep—it was obvious to us all that the transfer to in-patient care was necessary.

 

Once she had been tucked into her bed at the hospice center, Mom relaxed. In a pleasant room with soft lights, gentle hands tended her and hushed voices spoke to her. Within a day she fell into a deep “sleep,” snuggled beneath a hand-made quilt. Her breathing became shallow and somewhat irregular. I sat at her side listening to the rhythm, trying to divine from it some sense of when … when?

 

At 4:15 a.m. of the fourth day. As I whispered words of love in her ear. As I held her hand and rested my head on her shoulder. As I quietly sang her the songs of my childhood … as I sang her to sleep. It was beautiful beyond words.

 

Of course, there is an epilogue. My siblings, for reasons of their own, did not agree with the path our mother had chosen and held me accountable for my part in it. They insisted that everyone be told that Mom had died suddenly, but peacefully, in her sleep. I refused. “This story is my story too,” I told them, “and I will tell it when, and how, I choose.”

 

I took my mother’s ashes North, to be interred alongside my father. I did not attend her memorial service. I didn’t feel the need. I have not spoken to my family since.

 

I miss her and think of her every day. What she asked of me was, in many ways, the ultimate act of love. Honoring her enough to believe that she had the right to approach death on her own terms, I let her go. She had a good death—an empowered death. And that knowledge inspires me daily to live a more empowered life. It is a great gift. One of the last things my mother wrote in her little notebook was “Thanks. Good job, Brat [my childhood nickname].”

 

Good job, Mom. You’re welcome.

 


 

Kate O’Connor is a writer, editor and artist living and loving in Asheville, North Carolina with her husband, Clark Kimball. She is currently doing research for a book about a compassionate approach to end-of-life choices and empowered, conscious dying. If you would like to share your experiences, you can reach her at tellyourstory2@bellsouth.net.

Sandi Tomlin-Sutker
Written by Sandi Tomlin-Sutker