There’s Just No Predicting Death

My dad is good with his hands. All my life, he served as the family plumber, electrician, house painter, joiner, builder, driving instructor. He could fix anything, even the filament in a burned out lightbulb. He was a telegrapher during World War II. On board ship, he received and signaled morse code. Somewhere in the South Pacific, he decoded the message that his first child, a daughter, had been born. It’s one of the only things he talks about from that time. At 91, he fears dementia but he can still da-dit morse.

His early life shaped him into a hard man. At 12, his formal education over, he was winding the thread bobbins at the local weaving mill. He doesn’t cry because men of his era don’t. He doesn’t talk about his feelings because there’s no point dwelling on things. He has two mantras that he lives by: “Nature is red in tooth and claw” and “You make your decision, then you make your decision come right.”

Recently, my mum seemed close to the end of her life. She was diagnosed with a chronic form of leukemia years ago and told that at some point down the road she would need chemotherapy. That point was now. She was participating in a chemotherapy clinical trial that should have made the treatment more tolerable. Instead, as I feared, it was killing her.

I flew the 8,000 miles to be with my Dad, took the train and then a taxi to the derelict northern mining town they call home. The north of Britain is miserable in February. The driving rain, bitter easterly winds, and bleak skies leave me numb.

When my dad was “courting” my mother, he regularly cycled the 70 miles round trip between their homes, his in the industrial town of Preston, hers in the pastoral lanes of Hutton. He cycled even in the rain.

It’s 11pm before I walk in the door and hold my dad’s frail body. My mother lies in bed. I can see her from over my father’s shoulder. She’s been in and out of sleep for the last 3 weeks. She has no appetite so she’s been refusing food. I’ve been reading that these are signs she is losing her will to live. Her doctors believe the chemo sessions will extend her life. If this is her life, she’s clearly losing interest.

That first night I try to talk to Dad about the possibility that she may die.

“I can’t,” he cuts me off quickly. “I can’t.” His hands lie helpless in his lap.

During that time, I held my father a lot. Him seated in his chair in front of the gas fire belting out its stripes of heat. Kneeling by his side, my bent arms awkwardly cradle his head and shoulders. His tears come slowly, caught in the crevices of his worn face. His dark eyes are so small, lost inside his head. His unshaven stubble a clear sign of disorientation. I’m closer to my father now than I have ever been in my life. All our old wounds heal during these long days and even longer nights as we faced the possibility together that she may die. Since their marriage 65 years ago, they’ve rarely been apart.

When I was a teenager, he took my friends and I swimming to the local pool every Monday night. I practiced my life saving drills, swimming length after length with his large weightless body tucked under my right arm. I saved him until I had no more medallions left to earn.

My mum is 5 ft 2 in. Whilst she was sick her weight dropped to 70lbs. In the bathroom, helping her wash her naked body, her skin falls in drapes, hanging off her shoulder, catching on her hip bones. She lifted her buttock flesh like coat tails to sit on the toilet.

I wasn’t convinced that my mother wanted to live. I started to read books on dying. I rehearsed telling her that she had lived a good life. “Mum, it’s OK if you’re done,” I’d say lovingly. “If you need to let go, you can.” I told her I would be sad but that I would support her decision. She looked at me. Tired eyes. “It’s alright, lovey,” she would say, her tongue dry, heavy in her mouth. I bought lavender oil to massage her feet.

I think my dad’s willpower stopped her from dying. That and maybe the fact that I lost my my temper with her. Was she dying or not? I shouted. Make your decision and then make your decision come right? I don’t know what kind of denial is buried in that tangled mess of psychological fucked-upness

I did it after a trip to the hospital, 15 miles away. There wasn’t room in the ambulance for all three of us. So I got a taxi and met them there for the appointment with her oncologist.

Weeks earlier, when she’d been hospitalized because her sodium level had dropped to a life threatening low, I’d corresponded with the oncologist first via email and then by telephone. Setting my alarm for 3am (PCT) I could catch him after he made his rounds at 11am (GMT). I grilled him reading from my pre-drafted questions:

  1. Why was she having the severe reactions/symptoms she was having? Did her symptoms correlate with what they knew of the trial drug or the placebo?
  2. Were her current symptoms and side effects still within the bounds of normal for a woman of her age and health history undergoing her chemo regimen?
  3. Could he detail specifically what might be some of the long term side effects? For example, what kind of quality of life was she looking at after chemo? For example, on going bone and joint pain? Increased risk of infection? Ongoing renal disfunction? And was this information available from trials already conducted in the US or Europe?
  4. Was it time to consider hospice or palliative care?

A few days later, I’d hit him with a new round of questions:

  1. Is her sodium level improving adequately? What had it reached when last checked? How often was it being checked?
  2. Were there any additional concerns or developments regarding her health?
  3. I had heard from my father and the nursing staff that she was losing weight. Could he assure me that her weight and food/ calorie intake was being monitored closely
  4. Was there a plan to stimulate her appetite, build up her caloric intake? What was the goal and the timeframe for this plan? Had a nutritionist been brought in?
  5. Finally, he’d said he wanted to defer chemotherapy until she fully recovered. I was curious, what did “fully recovered” look like to him given her age and health condition?

My Mum and Dad have been seated on a the bench already in the waiting room when I arrive. Moments pass and the doctor emerges. Inside his small non-descript consulting room, I rear up to my full 5ft 7in and assertively stretch out my hand. He smiles as we shake. I glare. He is, after all, killing my mother.

He glosses the notes in my mother’s folder before closing it. “Well, Mrs. Wall.

All the tests indicate you’re doing fine. Your white blood count is back to normal. The treatment seems to have worked.”

There’s a pause. “What about her weight?” I ask.

“To be honest Mrs. Wall,” he ignores me and speaks only to her. “The only thing between you and a 90% recovery, I’m afraid, is food. You have to eat if you want to live.”

On the taxi ride home I am furious. I rehearse in my head what I will say when we assemble, all three of us, in the tiny living room in which my parents spend the majority of their day: “Enough, mother! Enough!” I call her mother when I am angry with her. “I get that you’re exhausted. I get that you have no appetite and the thought of food makes you sick. But you cannot keep on like this. You cannot continue to put Dad through this.”

I think of his crumpled face and helpless hands.

“You need to make a decision. If you’ve had enough, I will be sad and devastated but I will understand and I will do all that I can to support your choice. “But if you want to live then you need to start fucking eating because you cannot continue to put Dad through this hell of uncertainty. It’s cruel and unbearable.”

My raging internal monologue is interrupted by my husband.

It’s 3pm my time, 7am his. “Are you home,” he asks, sounding so far away. “Call me as soon as you get back to your folks place.” Outside of the cab, fading daylight. Nothing but hedgerows and houses in the passing bleakness.

I call back.

Matt committed suicide, yesterday. Shot himself. 9am on his way to work. The homeless park, near his office in Long Beach. On a bench. No note. His backpack, containing his laptop, had been stolen. No one had any idea he was unhappy. You should stay with your mum. She’s alive. Matt’s dead.

Matt is my husband’s older brother.

My parents arrive home. It’s already dark and I’ve turned on the lamps but I haven’t drawn the curtains. Our ghostlike silhouettes are reflected in the window.

At some point after they seat themselves in the living room and whilst I wait for the kettle to boil, I unleash my wrath at my mother. From her chair, mum nods assent. Yes she wants to live. She will eat. No, neither she or my dad can continue like this.

I brew tea and then slam a large piece of parkin on her lap. Parkin is a traditional, extremely dense, Lancashire cake made with steel cut oats, butter and molasses. I spoon on clotted cream for additional calories.

“Eat.” I say cruelly as I turn away, “all of it.”

That night she has terrible diarrhea. But she lived. She lives still.