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fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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Diane Guernsey

By this time next week, my mother may be dead.

In a sense, she’s been dying for a long time. This leg of her journey is the last in a decades-long trek with Parkinson’s disease.

She lies there, her head small and delicate on the pillow. Her hair is a wispy white thatch; her throat muscles are rigid, as if she’s just lifted a huge barbell. But her breaths come slowly, with long pauses in between, as if she’s nearly too tired to go on. Her brown eyes stare up sightlessly, lids half-open.

This nursing facility is part of a stepped-care retirement center where my parents moved more than ten years ago, anticipating the day when my mom would need more help than Dad could give her. They lived in an apartment there for years, while Parkinson’s slowly chilled my mom’s brisk, jaunty gestures and muffled her lively, Texas-inflected conversation into an inaudible murmur. (We all knew that this was inevitable, even though she received the most up-to-date drug regimen.) When a stroke unexpectedly felled my dad seven years ago, my mom, then 80, chose to move into the facility’s nursing wing.

About a month ago, Mom basically stopped eating. And she dwindled to eighty-five pounds on her five-foot-seven frame. That’s when Dr. Greene, the facility physician, called in the hospice staff. It was a hospice nurse who told us, jarringly, that my mom would be lucky to make it through the end of November.

My brothers and I flew in–they from the West Coast, I from New York. Now I’m back at her bedside for my second visit, a couple of days before Thanksgiving.

Medical science has given Mom a lot. But the Parkinson’s pills are now useless, and so much of the rest is chilly and inhuman: the shiny plastic oxygen tube that snakes beneath her nostrils; the tinny whirr and sigh of the oxygen machine. This machine sums it all up–the human wish to help, the imperfection of the attempt. “It’s not doing much for her,” admits Mom’s nurse, Charlotte. To me, Charlotte’s gentle voice and soft hands seem the only truly healing forces in the whole set-up.

But even the best-intentioned human efforts can fall short. The hospice people offer comforting words, but their soothing professional tones somehow remind me of artificial pancake syrup. I’m being ungrateful, I know. It’s not their fault that they can’t give me back my mother.

Someone has dressed Mom in a pretty, lace-edged sleeveless nightgown. It doesn’t hide much. Her body could be a living anatomy lesson–skeletal, graceful, each tendon sharply picked out. Her cheekbones jut out beneath her hollowed eye sockets. Her eyebrows arch elegantly, looking surprised. Her mouth gapes, gasping slightly with every breath, slower and shallower with each passing hour. When the nurses shift her in bed, I see her arms and legs, long, lean and bony as a colt’s. Sadness wells inside me.

Mom was pretty, spirited and energetic. “Once a Texan, always a Texan,” she’d say proudly. And she had a knack for making friends and connecting with people. “She can talk to anyone,” my dad said admiringly, and since, like him, I was shy, I shared his wonder as Mom chatted easily with the Disneyland ticket takers or the guards at the countless museums to which she and Dad dragged us kids.

Mom’s social smarts, curiosity and love of learning would have made her a natural teacher, social worker or journalist, but lack of money made it impossible for her to finish college–a lifelong regret. Like most women of her generation, she ploughed her talents into homemaking, tracking her children’s progress and misdeeds and volunteering for the PTA and League of Women Voters.

We didn’t always get on so well when I was growing up. Our temperaments differed, and our early rapport frayed as I entered my teens. We were pretty hard on each other–angry and hurtful, sometimes on purpose. I remember how Mom once criticized me to near-tears while she was trimming my hair in front of the bathroom mirror. As I bit my trembling lip, she snapped scornfully, “Why don’t you just cry?” Another time, I reduced her to wounded silence by sneering, “I’m smarter than you.”

After college, I kept things cordial but safely distant, fearful of more storms and scared that otherwise I couldn’t ever become truly independent.

Years later, though, well launched in my career, married and with a baby daughter, I felt a growing yearning for more closeness with Mom–and I called to tell her so. Over the phone line, I could hear her tone: she was thrilled. Without recriminations or regrets, she welcomed my overture. And I cried for relief, grateful that it wasn’t too late for me to try to rebuild our bond.

Although Mom and Dad lived far away, Paul and I visited them as often as we could, sharing the highs and lows of parenting and grandparenting as our daughters Cara and Aster grew up. For me, forging a new connection with Mom and being able to share my life with her felt like a real-life miracle–crucial to my success as a person.

Now I sit by her bed, watching her quiet, careful breaths.

When Mom’s nurse Charlotte comes to give her medications or water, she lifts Mom up, squirts the liquid into her mouth and says, “Helen, can you try to swallow?” Amazingly, a few seconds later the deeply carved Adam’s apple slowly bobs up, then down–like a mechanical demonstration of how the human throat works. Mom’s expression doesn’t change.

The only time she indicates any distress is when Charlotte puts a small spoonful of orange ice cream in her mouth, saying, “It’ll melt, so she can swallow it.” But then Mom’s shoulders shudder. “Is she choking?” I ask, alarmed. Mom gives a low, protesting moan–the only sound she’s made since I arrived. We watch tensely. Finally she relaxes; evidently the ice cream has gone down.

“Do you think I should try another bite?” Charlotte asks doubtfully. I shake my head; it would be too horrible if Mom choked, and food is no use now anyway.

Her time is measured in days, maybe hours. She’s on her own timetable; I can’t change that.

I have to go home tomorrow morning. I don’t know what to wish for. I want to be with Mom when she dies, but I don’t want her to die before she’s ready.

After all this time, we have no unfinished business–except this. So I do the only thing I can do: I sit, looking at Mom, waiting and remembering.

About the author:

Diane Guernsey is the executive editor of Pulse. The morning after this piece was written, Diane’s mother quietly passed away, with Diane at her bedside.

Story editor:

Paul Gross


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