A daughter’s story

In this, the third article in our series by guest authors on “How We Die”, Barbara Nutley Hunter recounts the death of her mother. She raises a question which Larry Librach and I discussed at length during his final illness, an issue that’s going to loom large in Canada in the next few months: physician assisted death. Whether you are for or against it (or on the fence) you should read Barbara’s story. It is stories like these that will illuminate the debate and shed a poignant human light upon the topic.

by Barbara Nutley Hunter

I went to see my mother two days before she died. The nurse on duty took a break while I sat beside Mom. I wiped her brow with a cool cloth. I told her I loved her. When the nurse returned I sat across the room for about an hour. The young nurse asked me a question.

“Everyone here loves your mother so much. They say she’s so special. Why do they feel that way?”

I told her that Mom was, indeed, a very special woman. A people person. She had made friends with her caregivers the way she made friends all her life. She asked them about their lives, showed an interest in every detail of one woman’s wedding plan and gave them her special “waggle wave” when they went off shift – her signal to drive carefully and take care of themselves. In return they brushed and braided her hair, brought her favorite treats and made sure new staff knew she was to be treated with gentle kindness. She was raised in a small town by parents who believed community service and caring for your neighbour were important. She was a volunteer and a neighbour and a caregiver extraordinaire.

 

In June of 2013, I got a call at work from one of Mom’s home helpers. She was still living in the house my parents purchased in 1962 and living mostly independently. She had help with shopping and other errands and had given up her car in favour of taxis but she did most of her own cooking and dressed and bathed without assistance. For an 88-year-old who had lost her husband of 61 years 14 months earlier she was doing well.

“Your mother has been vomiting all morning and she’d like you to come. I can stay with her until you get here.”

Mom hated vomiting more than any other type of illness and did it rarely so I knew something serious was going on. An hour-and-a-half later I had made the trip from Cobourg to Toronto. It was about three in the afternoon.

One of my first questions was about pain. Yes, she was in pain. How much on a scale of 1 to 10? Eleven!

One of my first questions was about pain. Yes, she was in pain. How much on a scale of 1 to 10? Eleven! We called 911. The paramedics were great, as always, and the hospital staff worked quickly to alleviate Mom’s pain and order appropriate tests. Later that evening in the E.R. Mom suffered some kind of “event” that caused her blood pressure to drop rapidly. Her speaking became gibberish and when I summoned the medical staff they were very concerned. When she recovered and regained her ability to speak they sent her for a CT scan. She was transferred to a ward. I called my sister home from a visit to her in-laws.

That day was the beginning of a year-long decline. Morphine was prescribed for the pain. The urine draining into the bag under her bed was brown. She had a bowel obstruction. Or not. The colonoscopy and gastroscopy didn’t support that conclusion. Diverticulitis? Perhaps. She was frustrated and so were we. Doctors came and went and nobody seemed to be talking to anyone. Doctors on the ward had no knowledge of the “event” in the E.R.

After almost six weeks in the hospital including 12 days of morphine, Mom couldn’t get out of bed without two helpers and couldn’t walk. Her 88-year-old muscles had been lying in bed for far too long. She was transferred to a seniors’ rehab facility.

Rehabilitation was not something my mother enjoyed. Getting ready for physiotherapy sessions meant getting dressed and into a wheelchair when the support workers were available to help her. That meant hours of sitting in a wheelchair until she had finished physio for the day and the workers were again available to help her back to bed. Sitting in a wheelchair was excruciating. Her back and neck ached after only a few minutes. She started refusing to get up and ate most meals in bed. Often too nauseated to eat (a symptom that started while she was in the hospital) she lost weight and more muscle tone. A meeting was called. In attendance: Mom, my sister and I, the staff doctor, a social worker, the government eldercare representative, a physiotherapist and the lead nurse.

“Mary needs to put more effort into her recovery.”

True. It was true that the pain and nausea made physio difficult but she could do it. When she wanted to. We were frustrated with her lack of motivation. Every visit we found her in bed. We tried to understand, tried to look at it from her point of view. She was 88, she’d lost her husband, she hadn’t been able to return to her home after being hospitalized, she had lost everything she loved and was comfortable with and she was constantly nauseated and in pain. Who could blame her?

Didn’t she want to see her only grandchild become a successful musician?

On the other hand, didn’t she want to see her only grandchild become a successful musician? Didn’t she want to play bridge with her friends or keep up her e-mail correspondence with a multitude of far-flung friends and relatives? We were angry. Why wasn’t she fighting harder?

In November Mom moved into a beautiful new seniors’ retirement and nursing complex. The first couple of months were better. Still in a wheelchair, she made the effort to be up and dressed so she could be wheeled down to eat in the main floor dining room. She participated in some activities and got to know a few of her new neighbours. Everyone on her floor needed some kind of nursing care but their mobility levels varied greatly and she often stayed on the floor for meals and companionship.

My sister and I arranged to celebrate Christmas in one of the common rooms and made it as close to a “home” Christmas as possible. We brought our own brunch, stockings were hung on the cupboard handles and gifts were opened with laughter and gratitude. We joined her for Christmas dinner in the main dining room. The decorations were stunning and Mom took us on a tour of the main floor common areas pointing out the beautiful trees and arrangements of greenery. It was the year of the ice storm and we pushed her out to the front entry to see the stunning scenery. Every branch glowed in the lamplight and the trees crackled in the wind.

On January 6, 2014, my sister arranged for a wheelchair taxi to take Mom to see her younger brother. Diagnosed with Parkinson’s disease he had recently moved to a public nursing home. Bedridden and too weak to even hold a book or magazine, his life was, in his own words, “somewhere between hell and hell frozen over.” Mom was in tears on the way home. Why didn’t he spend some money and go to a nicer place? Why hadn’t they at least brought some of his furniture and “treasures” from home to make the room nicer?

My sister believes her visit with him was the beginning of the end. She’s probably right. The nausea became much worse and there were fewer and fewer days out of bed. A world-class worrier, Mom fretted that she would run out of money, wondered what we would do with the house and worried about her dear baby brother.

Weeks passed. The house went on the market and was sold quickly. We started the process of packing up a lifetime of memories.

Weeks passed. The house went on the market and was sold quickly. We started the process of packing up a lifetime of memories. Mom would ask us what room we were working on. She knew where everything was and made as many decisions as she could from a distance. She was pleased that the new owners were expecting a baby. A baby in the home where she raised her own babies. The circle of life. The nausea got worse.

By the end of May she was eating very little and her doctor convinced her to go to the local hospital for tests. The non-invasive tests (X-rays, CT scan, MRI) showed nothing. They suggested a repeat of the colonoscopy and gastroscopy. She refused.

“You did all that a year ago and you didn’t find anything. I’m not going through that again.”

My sister called me in tears. They were going to release her having found nothing and if nothing changed she was going to die.

The day after she was released my sister and I arrived on her floor and were greeted by one of her favorite nurses.

“Did you know your mother has agreed to a feeding tube? Dr. T. was here last night and she says they’re going to put the tube in on Monday.”

No. We did not know. Furthermore, based on prior conversations, a feeding tube was the last thing our mother would want. We were confused. An emotional half-hour conversation with Mom took place.

“Mom. Do you remember Dr. T. visiting last night? You talked about a feeding tube?”

“I don’t want a feeding tube.”

“We know that, Mom. Dr. T. seems to think you agreed to have one.”

“No. I would never agree to that.”

And then, several times over the course of the conversation: “You know that if you don’t get a feeding tube and don’t start eating more on your own that you’re going to die.”

“I know. I understand. I don’t want a feeding tube.”

She was lucid, completely in control of her mind and her future. At my mother’s insistence, we brought in one of the nurses and went over it once more with her as witness. The next day Dr. T. went over the whole thing with her one last time and the decision was made. No feeding tube.

While in the hospital Mom had developed a terror of being left alone.

While in the hospital Mom had developed a terror of being left alone. We had hired 24-hour nursing staff and that continued. She had lost all track of time and someone who left the room for five minutes was accused of abandoning her for hours. She was alternately calm – mostly asleep – and panic stricken. The nurses were incredibly gentle as they washed her and changed her diaper but it was an excruciating process. She ate nothing but was terribly thirsty, her mouth constantly dry. Morphine treatment started after about a week. After two weeks she stopped swallowing the water we gave her, spitting it into a bowl held under her head.

Six days before she died my son visited her for the last time. Twenty-three years old, the cherished only grandchild, he adored his grandmother. He sat by her head, gave her sips of water when she woke up and clawed at the air trying to reach a glass. He held the bowl while the water dribbled out of her mouth. He wiped her mouth gently and used a clean, damp cloth to wipe her forehead. I like to think she knew it was him.

Dr. T. eventually told us that the doctors’ best guess as to the source of my mother’s nausea (in the absence of the results of the invasive testing she refused) was “a physical manifestation of depression.” In an 18-month period my mother lost her husband, her home, her ability to walk, her ability to take care of her own toileting and was in constant pain. Of course she was depressed. I have no doubt that her sub-conscious was capable of inflicting nausea upon her under the circumstances.

Mom passed away on June 21, 2014, three weeks after she refused the feeding tube. The last thing Dr. T. said to us was:

“Now I have to figure out what to put down for her cause of death.”

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The Supreme Court’s recent decision limits physician-assisted suicides to:

“…a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition, including an illness, disease or disability, that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”

One would hope that the new laws being developed by our government will apply to someone in a situation similar to my mother’s. When my mother made the decision to refuse the feeding tube she made the decision to die. She was completely lucid and in charge of her faculties. She was 89 years old. Nobody should have to starve themself to death. And nobody who loves them should have to watch that process unfold.

About the author

Barbara Nutley Hunter lives and writes in Cobourg, Ontario. She has published short fiction  in Lichen, Storyteller and Signatures. She was raised in Toronto by parents who believed in community service and lending neighbours a helping hand. In her spare time she owns and operates a bead store and makes jewellery that she never remembers to wear.