On my Mom's Passing

Wildflowers we gathered in my Mom's memory.

I got the call from my Dad on a Sunday morning in late October asking me to fly home to help care for my Mom.

We had almost lost Mom a month earlier to pneumonia, but the entire family gathered around her hospital bed, and by some miracle, Mom rallied. The initial relief we all experienced at her recovery was, however, overshadowed by the news that Mom had lung cancer.

That Sunday afternoon, my husband ran some laundry and started to pack a bag for me while I booked a plane ticket online. I practically ran to the gate to catch my flight that evening. Ironically we sat on the tarmac in Toronto for over an hour while the crew addressed some mechanical problem on the aircraft. When I finally arrived well after ten, I was very glad to find my brother at the arrivals gate waiting for me.

The lake across the street from my parent's apartment at the Berkeley.

Pearly Everlastings growing on the shores of the lake.

Reeds in the late-day sunshine.

My parents were in their pyjamas when we reached their apartment at the Berkeley (a residence for seniors). Sitting up in bed, Dad seemed relieved to see me. Mom lay at his side propped up on some pillows. I had been home for her 94th birthday the weekend before, but her decline in the intervening week was dramatic– she was pale and thinner than ever.

When she learned she had cancer, Mom elected to spend what time she had left at home with her husband of over sixty years. In the first weeks home, Mom did really well. Everything seemed almost normal. My sister, who lives in Ireland, even talked optimistically about booking a flight home to visit them in the spring.

It was all to clear upon my arrival that Sunday evening that an ongoing struggle with emphysema and the new battle with cancer were taking a huge toll on my Mom. I called my sister the next day and suggested she should fly home as soon as possible.

The difficult mornings began on Monday just before 5am.

With badly swollen legs and feet, Mom didn’t think she could walk all the way to the bathroom. Sadly the commode, that my Dad had once used while recovering from a stroke, was in pieces at the back of a closet. In the dim light of early dawn, my Dad and I began to struggle to piece the damn thing back together.

I have not the slightest nack for puzzles and Dad wasn't fairing much better.

"Read the instructions, Jen!" my Dad urged handing me a booklet outlining the steps for assembly. I took the manual in my hands, but the print was tiny with miniature illustrations that lacked any useful detail. In the meantime, I was acutely aware that my Mom waiting in the other room. To any onlooker, my Dad and I would have been a comedic pair if only the circumstances hadn't been so dire!

"What’s taking so long?", Mom called from their bedroom.

We did finally piece it together, but boy oh boy, it was a rough introduction to my new role as a caregiver.

When my mother learned she had lung cancer back in September she made a request to the doctor for medical assistance in death (MAID) that might alleviate any unwanted and unnecessary suffering at the end of her life. Mom believed that she had only to express her wishes and the doctor would put things into place and lead her through the process. The reality was very different.

There is a great deal of bureaucracy surrounding a medically assisted death in Canada. Laws and policies that vary according to the province or territory in which you live don't help either. In Mom's case, two doctors needed to do an assessment to determine if she was a candidate. Forms needed to be filled out and witnessed. After signing the written request, there is a 10 day reflection period (an exception can be made in special circumstances).

Just before receiving medical assistance in dying, the patient must be capable of providing informed consent. Sadly this last rule greatly impacted another Halifax woman who had stage four breast cancer that had spread to her brain. Fearful that brain cancer might impact her ability to provide informed consent right before the procedure, she opted to end her life sooner than she would have otherwise chosen. It's so very sad!

When life and death are involved, safeguards are understandable. But in my Mom's case, the bureaucracy surrounding medical assistance in dying couldn't respond fast enough to meet her rapid decline. At the time of her passing, we were still waiting on an assessment by a second doctor and palliative support was even further in the distance.

No one feels a bitterness about this more than me. It was me who sat with Mom in the early morning hours when the pain spread across her chest and down her arms. Over and over she'd ask me why she was being made to suffer when she had expressed her wishes to the doctor so clearly back in September. I felt helpless to answer her. Our healthcare system had ultimately failed her.

The gravel path that runs along the lakeshore.

On Wednesday night, Mom's breathing was horribly laboured. At eleven I called Kelly (nurse) to help me get Mom settled in for the night. Then I retired to my place on the sofa beside her bed. Troubled and unable to sleep, I lay in the dark and listened to the Mom's ragged breath and the rhythmic refrain of the oxygen machine. Finally, I drifted off to sleep sometime around midnight.

It was the silence that woke me just before two in the morning. I lay on the sofa for a moment feeling grateful that Mom was finally resting comfortably. But then that silence began to eat at me and I got up off the sofa to check on her. Mom had slumped down in the hospital bed. She looked so tiny she reminded me of a baby bird. I stood at the foot of her bed for a moment willing her chest to rise and fall. Nothing. I reached tentatively for Mom's wrist to check for a pulse. Nothing, but then I was so upset...maybe I was wrong.

Grabbing my cell phone, I went out into the brightly lit hallway to call Kelly.

"Can you come up and check on my Mom?" I asked my voice breaking a little.

A minute or two later I heard the elevator and Kelly appeared. "I think my Mom may have passed," I managed to blurt just before I broke into tears.

Thank goodness for Kelly! She was calm when I was anything but. She confirmed my worst fears and then left the room to call the paramedics. I picked up my phone again and called my two sisters, who piled themselves into a taxi in short order.

All the commotion awoke my Dad who was sleeping in the adjacent bedroom. With his walker, he shuffled into the bathroom still mercifully oblivious of Mom's passing. I paced back and forth outside the bathroom until he emerged and I was able to share the sad news.

The paramedics who arrived were kind and sympathetic, but because Mom had died at home and without palliative care in place, they informed me that her body would have to go to the medical examiner's office and a police investigation would need to be completed.

As the primary caregiver, I found myself viewed as something I never in a million years would have guessed were possible– a suspect in my own mother's death. I don't want to get overly dramatic here. The investigating officers were nice and respectful. I reminded myself repeatedly that they were just doing their job.  Thank goodness my sisters were there in time to see me through it all.

So many feelings and emotions have colored the last few difficult weeks. I am angry that our health care system failed Mom in her final moments–those hours of suffering were cruel. That Mom had a long and happy life is a great comfort.

I also feel an overwhelming sense of gratitude. What wonderful siblings I have! Many a time stressful situations like this can tear a family apart.

Thanks also go out to the private nurses at the Berkeley. Ladies, I don't know what I would have done without you! Thank you for your kindness and your council.

I am even grateful to Joanne of Because You Love Them Pet Services who came each day to play with the boys in my absence. Hearing the dogs' daily report cards was a bright moment at the end of what was always a long and difficult day.

Mom in her youth.

Painful as this post was to write, I feel I owe it to my Mom to speak out. When you're in pain and can't breathe properly, an hour can feel like an eternity. For Mom it was days. At this time, the procedures surrounding medical assistance in dying in Canada are too mysterious and too cumbersome. The process involved is a slow-moving mechanism that does not respond quickly enough to meet the needs of patients like my Mom.

In short, the laws and procedures that surround medical assistance in death need to tempered with a bit more humanity.