Notes From the Watch

By Katharine Hikel, “Dr. Trixie”

The end of life, like its beginning, happens more and more often at home, or in a home-like setting, where the participation of family and loved ones is part of the process. Vermont Woman has kindly offered to post some of the notes I took during the final illness of my mother, at her home in Maine. We hope that others may find comfort and encouragement in these words.

Wired

Everything comes by e-mail these days: jokes, letters from family and friends, and a report from my father in Maine that my mother went to her doctor to be seen for a cough, and found out she had a malignant pleural effusion around her right lung. Malignant pleural effusion puts a tumor at Stage 4, which is as far as it goes.

Later, over the phone, when I thanked Dad for the email and got more details, he said, "I e-mailed all of you" – meaning his six kids, coast to coast – "because I didn't know whom to call first." He's always been an equal opportunity kind of guy.

My mother herself e-mailed us the details of the pathology report, and some info from her doctor on the chemotherapy she was proposing to start.

We then e-mailed a list of all our cell phone numbers to each other and to Dad.

He e-mailed us Mom's hospital room phone number, and suggested the best times to call. She hasn't been feeling well enough for visitors, but she enjoys short phone calls, some of which are pretty funny, as:

ME: Mom, I heard you had your head scarves all picked out.

MOM: Actually I just heard about a place in Bangor that provides wigs and cosmetics for women undergoing chemo, so I'm going with that.

ME: So, Mom, tell me – are you gonna go red?

MOM: No way! BLONDE!

The initial round of chemo didn't go so well, so she landed back in the hospital with some complications, and decided no more chemo. Palliative care. She's 80 years old. She said, "It's my life – I am doing it my way. And I don't want to see anyone."

Dad e-mailed us that she was concentrating very hard on what she has to do, and feared being distracted. He said, "I'll let you know when she's ready."

I sent her a funny card, and set my travel bag out with a few things in it, ready to go. Or not.

Dad e-mailed us about the next procedure, to drain the fluid and do an intervention that will prevent its recurring. He also mentioned planning for home nursing care whenever she leaves the hospital, which she likes.

We siblings e-mail each other highlights of our phone calls with our mother. My youngest sister wrote, "She likes the view from her room."

Eastern Maine Medical Center is a beautiful place on the Penobscot River, with green courtyards, and a view of the water from every patient room. Bald eagles fly up the river looking for fish. It's one of the best-designed hospitals I've ever been in; I can see why she likes it.

Still, it's not home. My sister wrote: "Mom said the only thing she felt like eating was the hummus that Dad had made, and brought in a jar."

We sibs supplement our e-mails with a lot of phone time, during which a surprising amount of lighthearted humor occurs, as we reminisce and plan and distract each other.

Needless to say, some of us aren't getting very much work done.

I was thinking how different the connections were in my mother's younger days – operator-switched phone lines; post offices with mechanical scales; bumpy back roads. My mother said she once drove Route 1 from Augusta, Maine to Boston to buy a pair of shoes. It must have taken ten or twelve hours, all told. That was it for same-day delivery.

Years later, my mother, who was active in both the sex-education movement and the Girl Scouts, and has always had, as we say in Maine, a wicked sense of humor, brought home a poster that cracked us up. It showed a youngish woman, quite pretty and quite pregnant, in a green Scout uniform with the pins and sash and badges, her hands on her humungous belly, and a sly look in her eye. The caption, of course, was "BE PREPARED."

 I was always the last of my peers to get wired: to have an electric typewriter, a computer, Internet access, a cell phone; and I always acquired those things with reluctance. But right now I'm very glad for the elegance of this technology. It's helping me be prepared – for whatever happens next in my family life, while I wait for the next signal.

The Watch

My best friend in med school, Dr. J – who started out as a home-birth midwife – said that the first two things medical students should learn are labor-sitting, and death sitting.

We were taught neither. Certainly we were never led to believe that sitting down, anywhere, was a good thing. We learned the 'stages' of labor, and of dying, but we never sat with people; we 'rounded on patients.' It was pretty much an in-and-out kind of management style.

One of my colleagues actually got busted for offering massage to people on her service, back when she had the time. The patients liked it; it was the doctors who objected.

I never actually stayed with a woman throughout an entire labor, in the hospital. We were taught to pop in and out of the room for periodic checks, and then go in for the 'delivery.' We rarely had established any previous connection with whoever came in, so to a lot of us, the hospital approach felt like a violation of privacy: "Hi there, I'm the medical student, are you ready to push?" Not the kind of presence you would ideally want in an intimate moment, or at a major life passage.

Nobody is really with you in that setting; they do have other things on their minds: the patient in the next room; the end of their shift; utilization review breathing down their necks. This is not to say there aren't moments of grace; but still, the main process going on in any hospital isn't the patients'.

It's much the same with dying. People pop in and out, though at a different pace than in labor and delivery. There are long stretches of being left alone, unless someone other than hospital personnel is attending. For one patient I met, Mr. G, in end-stage heart failure, there was no one.

One of his nurses told me, "Why don't you go in and sit with him?"

I did. They'd given him a quiet room with a beautiful view of birch trees and snow. He was a charming old Italian gentleman, white-haired, very thin and pale. I sat in a chair beside him. He offered his hand, and I took it.

He didn't have the strength to talk much. He flirted a little, to break the ice. He told a few short stories. Mostly we just sat and held hands. Sometimes I checked his pulse or his breathing, but mostly we just sat. It was weird at first, but soon became the highlight, and the focus, of my days.

My resident and my team cut me, I thought, a lot of slack to do that, as I certainly wasn't doing any other work while I sat with Mr. G, over a week or so, holding hands and watching the snow melt as he grew weaker and weaker.

Then, of course, my time was up, and I had to transfer off that service and go to another hospital; it was all about the schedule. Mr. G told me, "When you leave, I'm gonna die."

The day after I left, my resident called me and said, "He died." I imagined his dying according to protocol, with people whisking quietly in and out of the room to check his vitals, and nobody staying to hold his hand.

My mother is spending her final time at home, with my father, her husband of fifty-four years. She's in quite a lot of pain, but she doesn't want to be overly medicated. She wants to be with him, and hold his hand.

They sit for hours together, quietly, or communicating in the minimal way people have who know each other's thoughts. She drifts in and out of a dream state, with the narcotics, but it's he with whom she is most lucid, most aware. He attends her round the clock, giving her scheduled meds at ten and twelve p.m., and again at four in the morning, keeping a precise record of the medication and dosage.

I thought this a pretty demanding schedule for an 80-year-old guy, but he said, 'I'm the only one who has nothing else to think about but her." He said, "A nurse would be thinking about her own family. I'm not concentrating on anything but taking care of your mother. There's nowhere else she could get this kind of care."

"She would have done it for me," he said.

We, their children, are gathering to spell him for some of the sitting, attending our mother during this difficult passage, as her breathing becomes labored, and her least movement causes pain; but mostly we are here to take care of the details, the housekeeping, the food supply, the laundry, and the telephone, so that he can sit beside her for as long as they like, holding her hand.

Coming Home

The long drive back from Maine, on Route 2, is something I've done a hundred times. On a bright fall day, with a panorama of changing leaves, and little traffic on the road, it can be a meditative experience. Six hours of meditation, with music and occasional rest stops, isn't the worst way to reflect on the passing of a life.

My young daughter and I listened to Mozart, piano jazz, and silence. She slept a lot, in her car seat, processing the past few weeks in her own ways; I drove, and thought about the life I had left behind, and the one I was heading back into.

An old friend who now lives in L.A. recently spent time in New York, attending the death of her own mother. The day after my mother died, she told me, "It was hard for me to leave. When I got home, I kept wishing I were still back there."

The first few nights I was home, I woke up not sure where I was, thinking I had heard my mother's voice, or my father's.

The first few days I puttered around, resuming the usual tasks and chores, and enjoying those quiet moments – folding laundry, fetching firewood, washing dishes – when memories of the past few weeks would come back to me.

Those last few times I saw my mother smile. The last time she spoke, or squeezed my hand. The way she looked, finally, after she drew her last breath; and I waited; and felt for her radial pulse, and found none; and listened with my stethoscope for her heartbeat, and heard nothing.

And how it was, in her room, after we took away all the unlovely medical supplies and paraphernalia; and she was lying there at rest, her eyes closed, in the soft light of the candles we lighted for a quiet family wake, with everyone saying goodbye for the last time before the cremation people came to take her body away, in a crimson velvet shroud, on a light gurney.

And the quiet in the house.

People came by, for long visits, bringing food from their kitchens and flowers from their fall gardens. We kept candles burning. We drank a lot of coffee and a little wine. Every so often I'd think, "I'd better go check on Mom." Her room seemed big and empty.

Her last days were a decline into wordlessness and pain, when narcotics were the only thing we had to work with. Looking back, I think I should have increased her medications sooner, and not allowed the pain to break through. It was hard to know at the time, especially when she could no longer say what she wanted.

I'm not sure – contrary to popular belief, and to what the hospice brochure suggested – that after that point, there was anything spiritual about the process of dying. It seemed entirely physical to me, and entirely governed by pain and respiratory distress.

Had I known those details in advance, I might have asked my mother, back when she was able to answer, something like: "Mom, when would you like me to push your meds? When you can no longer speak, or swallow? When you cannot open your eyes, or feel anything but pain?" I would have asked her, "Sooner? Or later?"

I'm sure she would have told me. Exactly.

It's always good to have the freedom to decide.

Her last day was one of unremitting pain, little consciousness, hard and troubled breathing, a ceaseless cough, despite the heavy regimen of medications we provided. When we called the hospice people for guidance, they told us, "You can try doubling her doses of everything." We did; she seemed to relax, and find ease; and a little while later, she died.

I was, and am, thankful that the agony had ended.

Now, back home, the routines of living seem easy and familiar. The guidelines for dying are so vague. There is no accurate time frame. The pain meds can fool you into thinking that the dying person is better, at one moment; or close to death, the next. It's truly a venture into the unknown.

In much of our lives, we are generally accustomed to signs of improvement, or at least stability, rather than decline. Dying takes us by surprise; there are no gains, only losses. I would catch myself thinking, "She looks better today." Yet when other family members said those same words, I would think they were deluded. The reality was that there was no getting better, at all. That was a lesson I relearned every day, every hour during those final weeks of my mother's life.

I'm glad I was there. I'm glad it's over. I'm glad to be back and occupied once again with life.