Dying on Her Own Terms

At 63 years of age, I have entered into a phase of life punctuated by ongoing death and loss. Still, I slip comfortably into the pattern of pretending that death will not happen to me or to the people I love. This is a story about how my mother died on her own terms and about how I almost missed this most sacred transition.

Recently I arranged a new display of framed photos on shelving on my dining room wall. I have more photographs than the shelves will hold so periodically I switch out some for others. When I was finished, I stood back to admire my new arrangement. As I gazed from one photograph to another, I felt a jolt throughout my body when I realized that every loved one on the wall was dead. Each person held a special place in my heart, yet each was dead – husband, mother, father, aunts, uncles, mother and father-in-law, family friends.  Suddenly I felt the pressure of loss acutely deep in my soul. Losses added up, one on top of the next, the most recent being my mom’s death. I almost missed being fully present with my mother during her final transition.  

One of the most difficult things about caring for my 94-year-old mother during the last year of her life was her telling me, “I just want to die.” At the time I didn’t know that expression of the wish to die was not uncommon in persons with dementia, and that untangling depression, dementia and rational choice is murky, at best. My heart ached terribly when she would tell me that she wanted to die. Sometimes I would acknowledge how hard her life must be. Other times I tried to distract her, like the professionals suggested, with food, music, television or conversation about friends, family and current events. Increasingly the distractions failed.  Her expression of wanting to die left me feeling helpless as I struggled with my own feelings of losing my mother, my rock.  I wanted desperately to lift my mother out of her darkness, to give her hope and to reengage her with life. My mother wishing for death was not my mother, the mother who was always by my side and my biggest cheerleader in life.  My mom was someone who loved to laugh, joke and be happy. She had a loving family. She lived in her own apartment in a retirement community, down the hall from her identical twin sister. She was financially secure. Despite her dementia, I believe she remained acutely aware of what was happening to her as she faded away. Her strength of spirit never failed her. 

Because of my nursing background when someone tells me that he/she does not want to live, I go into assessment and treatment mode. I was convinced that if we could successfully treat my mom’s depression that she would return to this world and to me. I encouraged her to eat by cooking her favorite foods and sharing meals with her. I encouraged her to increase her activity (she was never an exerciser) by offering to walk with her throughout the retirement community campus or in the gym that was just down the hall from her apartment. Her geriatrician started her on antidepressants. All attempts to pull her out of depression were futile. She continued to express her wish to die.

In hindsight I wonder, did I want to stop hearing her wish for death because I could not face losing her?  Was she clinically depressed or was she asserting her will as her well-lived life faded? My mother loved and was loved by family and friends throughout her life. She had a meaningful career as a woman’s health nurse practitioner, one of the first in the country. For years she ran a woman’s health clinic at a large public university and helped countless numbers of young woman through difficult times. My mom shared a deep and abiding connection with her twin sister that was awe-inspiring to my siblings and cousins. Mom and my aunt shared priceless times over the years “junking,” as they called poking around in antique malls, snorkeling for seashells in the Gulf of Mexico, and visiting with life-long friends in a special gathering place in the foothills of the Allegheny Mountain in Western Pennsylvania. My mom survived a difficult marriage and successfully raised three children, almost on her own but with the support of her mother, sisters and friends. She adored her two grandsons, and she was always there for them as my husband and I balanced career demands, professional responsibilities, and family life. Mom joined us in our hectic life by driving our sons to baseball and soccer practices, attending our neighborhood parties and sharing special events like an Eagle Scout Ceremony, a baseball tournament, a birthday or a holiday. My mother loved to laugh and liked to play practical jokes. One of her favorite jokes was to serve coffee to an unsuspecting person in a mug that contained a ceramic roach bug on the inside that one noticed only after drinking enough coffee from the mug to uncover the bug. She never tired of this practical joke, and I am not sure my husband ever totally forgave her for playing this joke on him!

As I began to really listen to my mother through my own lens of grief, I came to realize that her wanting to die was most likely a function both of her dementia and her choice of how to live. In retrospect, I can see that for almost two years, she gradually withdrew from life while transitioning to dying. Macular degeneration gradually took her eyesight. Frailty limited her ability to walk within and outside of her retirement community. Mom stopped going to her Humor Club and Writing Club, both of which she led for a period of time during while living at the retirement community. She gradually stopped making flower arrangements with her sister for residents coming out of the hospital, stopped writing stories of her life, stopped watching her beloved Tampa Bay Rays on television, stopped attending family get-togethers, stopped going to the dining room for evening meals, and stopped taking her medications. Her withdrawal was so insidious that for so long I didn’t see it happening, nor appreciate that her gradual withdrawal was her acceptance of the short time she had left on this earth. I diligently kept up with her medical appointments with multiple specialists who only saw one part of my mother at a time, not the whole person I saw. When I asked her cardiologist if we could simplify my mother’s medication regimen by stopping the medication to control atrial fibrillation he replied, “Why would we do that?  Look at her. Her heart is perfect.” Diligently, I tracked prescription refills, made sure the pharmacy was paid, filled and refilled pill boxes twice a month, and used timers and phone calls to remind my mom to take her medications. At some point I began to understand the futility of my diligence. I recalled my mother’s account of her own mother’s death. Apparently, my grandmother was ready to die at the age of 94. She quite taking her heart medications and shortly thereafter died quietly in her sleep. In relating this story multiple times, my mother was telling me how she wanted to die.

As my mom withdrew, she spent more and more time sitting in her favorite place – on a worn soft sofa in her sun porch that overlooked a large lake. She would sit on the sofa for hours, in silence, gazing out at the lake, occasionally commenting on the boat traffic. Most of the times she was dressed, sometimes she was still in her coffee-stained nightgown at three o’clock in the afternoon. I still had difficulty understanding her gradual process of letting go and of dying on her own terms. I could not bear to imagine my life without her in it. Clearly my aunt had trouble seeing my mother’s decline as well. My aunt couldn’t understand how my mother could sit in silence, without television or music, for hours at a time gazing out the window at the lake. My aunt, who had her own health problems, tried to coax my mother back into a life that we wanted for her.

One day, after my mom went into hospice care, my aunt and I were sitting at my mom’s bedside. My aunt, uncharacteristically outwardly emotional, said through her tears, “I just can’t believe she is dying. How is this possible? Come on, Audrey, don’t give up. Don’t give up now. I need you too much.” I thought for a long moment, then said to my aunt, “This does seem unreal, but I think Mom has been telling us for quite some time that she is ready to die. Mom’s world has gotten smaller and smaller every time she let go of something that used to give her joy. I think she has been dying for quite a while now.” We sat in silence while the tears streamed down our faces. We both witnessed intimately Mom’s gradual withdrawal from life, yet we didn’t understand its meaning until much later during the last two weeks of her life. 

One very caring and wise hospice nurse taught me that transitioning to dying, like grieving, is work. She explained that my mother was figuring out how to leave this world and step into the next one, that she was moving between life and death. Perhaps she had been doing this dance between life and death for months, but I just couldn’t see it. The nurse taught my aunt, brothers and I how to support my mother during this process by keeping her comfortable and pain free, maintaining a soothing environment, being honest with mom, and talking to her even when we weren’t sure if she heard us. I learned that my mother liked having her head and forehead rubbed. Sometimes she liked a cool washcloth placed on her brow. One time after my mother had been unresponsive for several days, she opened her eyes, looked directly at me, and asked, “Doesn’t anyone feed you around this place?”  I asked her she would like and without missing a beat she said, “chocolate ice cream.”  She ate only two small bites but the smile on her face as she drifted back to sleep told me that these two bites were just what she needed. 

I now think of my mother’s last year of life as her personal journey through grief as she coped with the multiple losses that she experienced as she grew into very old age. She didn’t run away from the losses, she worked through her grief and somehow was at peace. She died with dignity and on her own terms. I am proud of the strength she showed our family at the most vulnerable time of her life. My mother left no unfinished business. My mother left this world on her own terms just as she had lived her entire life.