Monday, November 12, 2018

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.

37 comments:

  1. I feel for you. My mother's death was easier, in a hospital, but the experience was devastatingly hard, and will never be forgotten. I hope you will find peace.

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    1. Thank you Candy. As you say, losing a Mom is devastatingly hard even under better circumstances. Every day gets a bit better, but I will always miss her.

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  2. Jennifer,
    I am so sorry for the loss of your sweet Mom. Praise God for the memories of all the sweet times with her and hold them dear! I'll be praying for God's healing and comfort for you and your family.
    In His love, Linda Mc in Kansas

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    1. Thank you Linda for your sympathy and prayers.

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  3. I am so sorry for the loss of your mom. My thoughts and prayers are with you and your family during this difficult time.

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    1. Thank you Liz for your thoughts and prayers.

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  4. I am so sorry for you and your family's loss. I am also extremely sad that your mother had to go thru so much at the end of her time. Sadly we have so little control over how we leave this world. Enjoy your memories of your mom and glad the 4 legged children are having cuddles while you are gone.

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    1. Thank you Sue. I wish Mom's final days had been easier. At least she was surrounded by the people she loved. I am sure it was a comfort.

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  5. I am so very sorry for your pain and loss. My father passed a little over two years ago and the loss is one I still feel, though the sharpness dulls with time. I hope the good memories will continue to ease you, and the loving family bond support each of you, through this difficult time.
    My father died, somewhat unexpectedly, at home in his sleep. Which meant my mom also had to deal with a, very gentle, police investigation. It's an odd thing, but I guess I understand.

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    1. Thank you for sharing your own experience of loss Kathleen. I am sure I too will find that the pain of loss will dull over time. I will heed your advice and try to focus on good memories and happy times.

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  6. Thank you for sharing this very intimate, personal story. I stand with you in that legal medical assistance needs to be reactive to reality. This is not time for bureaucracy, but compassionate action. Ending a life is a very serious matter, but in an emergency such as this, the process should be expedited to meet the needs of the patient. God bless you and your family. Your mother was beautiful.

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    1. Thank you so much. I so appreciate your kind understanding.

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  7. I am so sorry for what you and your mom went through. Unfortunately the bureaucracy is well intended but functions only to obstruct and frustrate. Please complain to the local legislature or whomever appropriate, in your mom's memory. And cherish all those good memories.

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    1. Thanks Beverly. I think I should follow your suggestion. Sometimes you need to work to make changes happen.

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  8. Reading your story makes me think that the deaths of both my parents in the year 2000 was far less complicated than it would be now. Here in Australia, you need an Advanced Care Directive but I suspect the whole procedure is very cumbersome just as you found. Thanks for your story, it is a universal one.

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    1. Yes, I am sure it is a universal issue. Here the law changed just 2 years ago to permit medical assistance in death. The change was a positive one for patients dealing with a terminal illness, but I think there is still room for improvement in meeting patients needs.

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  9. Thinking of you Jennifer at this difficult time, made especially so by your mom's circumstances. I agree the law needs some changes and I hope they are made soon so that all will benefit. Thank you for sharing.

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    1. Thank you Maggie. I think there is a government report being done that will hopefully lead to improvements in the law.

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  10. So sorry to hear of your Mom's passing and sorry it was under such circumstances. My late husbands last few days were made pain free thank goodness, while nature took its course, each country must have different laws. You are all in my thoughts and prayers at this sad time.

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    1. Knowing your husband's final days were pain free must have been a comfort in difficult circumstances, Pauline. Thank you for your thoughts and prayers.

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  11. So sorry to hear of your mom's passing. November 12th is the anniversary of my own mother's death - 7 years ago - and I still miss her so much. But the pain does soften over time, as I'm sure you know. I'm sure your mother was very proud of you!

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    1. Thanks so much Anne. I hope she was proud of me. I certainly tried to do my best for her.

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  12. Ahhh, so sorry for your lossand that your lovely mum's final hours were unpleasant. I hope those memories fade and that you are only left with the happier ones. Hugs to you all.xxxx

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    1. I hope you're right. Happy memories are the ones you want to hold dear. Thanks for the hugs Snowbird.

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  13. This is such sad news. I'm so sorry to learn of the pain that all of you must have felt over your mum's final days with you. Once you are able to navigate around the dark hole in front of you that her death has created, you will eventually find the going easier. You've had a rough few months losing two of your best beloveds. Take time to take care of you.

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  14. I'm so sorry for your loss and also for the pain your Mom suffered. I always remember what my elderly neighbor said when my Mom died, "You're never old enough to lose your Mother." Your Mom was beautiful and I know you have many happy memories of her. I'll be thinking of you.

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    1. Thanks Diane. I do try to remind myself just how lucky I am that Mom was around for the vast majority of my life. She had a long life and I will miss her dearly.

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  15. Jen what words can I say ... I truly am so sorry for the hell you have gone through with the ridiculous regulations that compounded the suffering you and your family have gone through, let alone what your mom had.
    What a gorgeous young woman she was .. that is a wonderful picture of her!
    I am glad you had the support of your siblings but you should never had been put through such circumstances ... I am so sorry.
    Your pictures throughout the post were beautiful .. they offer a type of flow and peace some how ... and now your mother is at peace.
    I hope some day you will be to.
    My sincerest condolences dear woman.

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    1. Thank you for the condolences Joy. I had never seen that picture of Mom until recently. She was a pretty woman though I don't think she thought of herself as such. Yes, it was a great comfort to have my siblings there to help. I do feel a bit more at peace as time passes and I refocus my attentions on my father's care. No matter what I felt, this was hardest on him.

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  16. My sympathy. My thoughts and prayers are with you and your family.
    And I agree with you our laws need to be revisited and revised to make this a less complicated process at such an emotional time.


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    1. That is my hope too Betty. Thank you for the thoughts and prayers.

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  17. We will all cross-over and be together again.....it's a promise.

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  18. Jennifer, I am so sorry to read of the loss of your mother and the circumstances of her last days. My thoughts and prayers are with you and your family.

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  19. I am so sorry for your loss Jennifer and my heart goes out to you and your family. May you keep all the happy moments and fond memories close to your heart, and she will be with you forever. You and your family are in my thoughts and prayers.

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