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Point of View

The long goodbye

By Sherry A. Guardiano, D.O.

I listen for breathing. I feel for movement. A slow, low hush comes from within—then nothing. I had performed the same process numerous times in the four months since I'd started my internal medicine residency, but this time it was different.

I look up at the tired, scared man staring at me and say, "She's left us." The young woman at his side states, "She's in a better place now, Daddy." Then they both break into tears. This is news I have delivered before, but nothing prepared me to tell it to my dad and my sister. I gently close my mother's mouth. Her face is so pale—very different from the face in the photos adorning the walls of her bedroom, where angels hang everywhere and a cross prominently oversees it all. So much love . . .

I compose myself and head for the phone—many people to call. Methodically, the numbers are dialed, the news delivered, and the arrangements discussed.

The Point of View essay provides personal insight or opinion on some issue in medicine or science. Guardiano is a rheumatologist at Dartmouth-Hitchcock Keene. This piece is adapted from one originally published in the April 7, 2009, Annals of Internal Medicine.

Cancer: I thought I had said "goodbye" long before. My mother's unremitting headaches, double vision, and history of breast cancer had prompted me as a fourth-year medical student to call her doctor to request a computed tomography. "I really don't think this is viral," I said. "She has double vision." My then-fiance, a fellow medical student, and I both understood the course ahead when we saw the scan studded with masses in her brain. "How is she even speaking?" I asked her radiation oncologist.

We moved up the date of our wedding. She made it. On the eve of our original date, she was admitted to the hospital with a deep venous thrombosis. She saw my sister graduate from college and get engaged on the same day. She even made it to our medical school graduation despite horrific back pain.

I started my internship with great reservations, but she would not let me delay my training. My sister had taken leave from her job so she could help care for Mom. The guilt I had about not doing the same was crippling at times, but I heeded her wishes.

Ready: One morning I received a phone call from her. "Sher," she said, "you haven't gotten the clothes ready."

"What do you mean, Mom?"

"I see her. That little blonde 'pill' keeps running around my bed." Little did she know, or maybe she did, that six and nine years later I'd have two beautiful little blond "pills" of my own. She dreamt vividly and, I believe, lived 30 years during those last few weeks.

My mom was meant to be a grandmother like no one else I know. When I was a child, she would talk about how she couldn't wait to be a "grandma." In the meantime, she lived for my sister and me. She never missed a band concert, play, ball game, or ski meet. She encouraged us to never quit, even when we weren't successful. She'd say, "Sometimes it's not the outcome that is important." She hadn't wanted me to become a doctor. She worried about what kind of life I'd have. Would I find love? Would I have time for kids? Would I be happy? She stopped worrying after she met Rob. She knew that, together, he and I could accomplish anything.

Flying home to Maine on post-call days only to return right before my next shift was taxing but necessary. My dad and sister were exhausted by caring for her and trying to understand what was happening. We were inundated with calls from worried family members. During one conversation, I was asked, "What do the doctors say?" I felt like screaming, "I'll tell you what this doctor says. She's dying. She is not going to get better, no matter what I or anyone else does!" But what I actually said was, "Be prepared to come at any time."

I know he felt I had taken his hope away, but my mother had made it clear she did not want to go into the hospital again.

During one of my visits home, she began having seizures. I called her doctor and we picked up some carbamazepine. I didn't take her to chemotherapy the following day. "What are you doing? She needs that to get better!" my father huffed.

Hospice: "No, Dad," I said. "It's done. Hospice is coming tomorrow." He didn't talk to me for two days. I know he felt I had taken his hope away, but my mother had made it clear she did not want to go into the hospital again. My dad did not comprehend the odds when the oncologist had said, "She might have a 10% chance of surviving another few months with another round of chemotherapy." All my dad heard was, "She has a chance."

A week later, I was giving her lorazepam every two hours to control the seizures, since she could no longer swallow the carbamazepine. Her morphine dose needed continual adjustment because every time we moved her, she winced in pain. We swabbed her dry mouth constantly, hoping to keep her comfortable. It was just a matter of time.

We cared for her and for each other in shifts, with the help of the amazing hospice nurses. My sister was the spitting image of Mom in looks and personality—beautiful, warm, caring, emotionally transparent, and outgoing. I'm more like Dad—stoic and quiet—though before Mom got sick we were not very close. We never asked "Why?" Together we prayed. We cried. We loved. We changed.

The mottling began on her knees and buttocks, and I told my dad and sister the end was nearing. The three of us were curled up on my parents' bed that Sunday night, watching Mom's favorite show, Touched by an Angel, as she lay in a hospital bed beside us. All day the death rattle rang. I think I had actually drifted off to sleep when I suddenly realized I no longer heard the rattle. I got up, took my stethoscope, and listened.

It had been the longest goodbye and I am still saying it.

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