Sandra’s story: How I supported my son on his journey with assisted dying
Personal Stories | July 27, 2018 | Dying With Dignity Canada
Readers of the Dying With Dignity Canada blog will be familiar with Don Kent, the Ottawa-area man who candidly documented his quest for an assisted death in a seven-part series called Don’s Journey. Don gave us all an honest look into the end of his life, from his terminal cancer diagnosis to his frequent trips to the emergency room, and finally, to his medically assisted death on April 20.
In this very special blog post, Don’s mother, Sandra, shares what it was like for her to support her son through every step of his journey.
For nearly nine years, I celebrated the fact that my son Don had survived throat cancer. But then, reality hit.
About two years ago, Don began to experience problems attributed to his concentrated radiation treatments. He — and we, his family — reluctantly had to accept that he would eventually have to face complex surgery to replace a deteriorating jaw. We knew what this surgery would mean for him: he would no longer be able to enjoy a thick, rare steak washed down with beer or a gin and tonic. He remained positive, as was his way, and insisted he would still create some of his great soups and spicy sauces for pasta. What at that time seemed a difficult fate actually turned out to be a minor blip in life’s progress compared to what lay ahead of him.
As the months went by, it was terrifying and painful to watch him choking on food or drink and becoming increasingly short of breath and stamina. My social animal son became hesitant to join friends for dinner or happy hour because they would panic at his choking. To him, it was easier to cope with this new reality when he was by himself.
Don in Florida during happier times.
When Don returned to Canada at the end of his fourth winter in the sun in his beloved Florida, his doctors decided the only help for him was to have breathing and feeding tubes inserted surgically to allow him to breathe more easily and be nourished more efficiently. After losing a lot of weight, he was happy to have become one of the slim guys, but agreed that near starvation was not a good diet.
At the time, Canada was considering all aspects of medical assistance in dying (MAID). Don openly expressed his support of its possible legalization and tried to help the cause. He was jubilant when MAID became legal in Canada in 2016.
When the date for Don’s surgery approached, I increasingly became agitated. He often had declared that he would never want to live in a state of dependency or with extreme disability. I tried to suppress and hide all the symptoms of my panic, but finally reached out to my family doctor and then a therapist. With the help of mild, calming pills and wonderful advice, I was able to cope with my fears that Don would refuse to continue living in such difficult conditions.
How could I have doubted the courage and positivity of my amazing son? I was part of the team trained to help him when required as he adapted to his new life. But he quickly refused all aid and dealt with the intricacies of all his apparatuses himself.
Months went by with his life sustaining needs being met, and then another monster became a threat. His voice became raspier and, finally, almost incomprehensible. Ironically, in earlier years he often phoned me using a gruff, supposedly anonymous voice. Now it was reality. Even his wife, Barbara, his most able translator, often misunderstood his attempts at speech. The loss of his voice was a crushing blow to him. Now he felt isolated. He learned to use texting with an interpreting mechanical voice, but was still frustrated when he tried to communicate, especially in group situations.
A possible relief was offered when his doctor booked him for a surgery that might permit him to swallow liquids or pureed foods. There was even the possibility that the surgery would allow a mechanical voice to be implanted in his chest. Despite my fears of any surgery, I felt this was to be a wonderful gift. Unbeknownst to me, Don and his doctors had begun to fear a more desperate problem. The surgery, which was to include a rebuilding of his fractured jaw, was to last from 12 to 14 hours.
This photo from February 1, 2018 shows — in Don’s words — “the fine surgical work of my ENT.” Although it may look uncomfortable, Don felt very little pain.
Barbara and I tried to remain positive on the day of his surgery, and when no call from the medical team came after five hours, we celebrated that all must be well. All agitation was relieved. My horror was overwhelming when a call came and I heard Barb say, “Oh no.” We were with Don when his surgeon and his team presented us with his prognosis. He had a return of throat cancer, and it was terminal with no treatment available and only a horrific future ending. Immediately, Don requested medical assistance in dying. I should not have been surprised, but the word “dying” was a thrust to the heart. All the medical professionals caring for Don agreed that his request was reasonable and that it was, perhaps, his only option.
Only months before, death had claimed my other son, the eldest of my four children. I could not face losing my dear Don, a huge part of my life, and my only child living nearby. I tried to bury any thought that he might soon be leaving us. It was much too painful. I willed myself to become like a head-in-the-sand ostrich.
We celebrated the Christmas season with Don, Barb and my daughter Kimberley and her husband, Dan. We all knew it would be Don’s last, but we soldiered on with smiles, love and family traditions. How did Don deal with this reality, I wondered, when it was so painful for me to admit? Weeks later we celebrated Don’s and Barb’s birthdays, again attempting to maintain normal traditions while all recognizing the inevitable future.
Days, weeks and months went by with Don spending his days tending to his medical apparatuses and in hour-long feedings. He withdrew from most social contact other than by the internet. I had arranged to stay near him rather than spending those months in my Florida home. I treasured any time I was able to spend with him, but I understood when it was infrequent since it was exhausting for him to try to converse. He had Barb always nearby, as well as daily visits with a nurse and frequent medical appointments.
When in late winter Don said rather abruptly, “Mom, I will be dying soon,” my mind refused to process it. I had known it was inevitable, but always later, much later. The date he had chosen was much too soon, so fast approaching. His medical problems had become more frequent and more horrific. His life crashed from crisis to crisis as clots occurred, almost completely blocking his breathing tube. He must have experienced terror many times, as did Barb who would attempt to help him. Occasionally it meant races to emergency rooms via ambulance. My head told me that to wish to keep Don with us much longer was truly selfish, but my heart prayed for more time with him.
Don and his wife, Barb, at a friend’s wedding where Don was the best man.
When Don’s health took a downward spiral into frequent medical crises, he began to chronicle his episodes in mass emails to those dear to him who asked for constant health updates. Sometimes the emails were heart-wrenching to read, but they were often also comical as Don continued to see the humour in life. When Don’s physical voice failed him and his social isolation increased, online communication became a way for him to remain connected to the outside world. He was always incredibly honest and articulate in the sharing of his circumstances, and family members and friends encouraged him to keep a more regular journal or blog. Although he was fun loving and gregarious, my son had always been reluctant to share his intimate thoughts and emotions. As he embarked on his final journey, though, he began to share.
Don took comfort in realizing that his fast approaching death need not be horrific and that he could control the time and place of his final farewell. He also thought of all the people who hadn’t had this option prior to 2016 when Canada legalized MAID. He contacted Dying With Dignity Canada (DWDC) to offer the organization any assistance he might be able to provide in making others more aware of this newly available option. In response to his offer, he was asked to write a diarized blog of his assisted dying journey. During his final months of life, this gave Don a new goal, which he approached most seriously as he began writing regularly for DWDC.
As Don’s health rapidly deteriorated and death approached, chronicling his experiences seemed to calm him. Facing his fears probably lessened them and he accepted his fate. In his blog series, Don’s Journey, my son described the required steps he took to obtain the right to medical assistance in his final hour. He was comforted in thinking there was a purpose to the end of his life, and he hoped that by sharing his story that others facing similar realities might benefit.
I, his mother, am most proud of his courage and caring.
After Don made his requests for medical help in leaving the world, his surgeon and palliative care doctor suggested getting local help so that he might die in his own home in Kemptville, Ont. He fulfilled several requirements to availing himself of MAID. Papers were signed and all was arranged.
As time ticked closer to the dreaded date, I became obsessed with the fear that when I was with him in his final moments, I might lose control and deny Don his wish for a gentle, quiet end of life. I planned to dose myself with calming pills, but ultimately, they weren’t used. He had invited Barb, his two beloved sisters and me to be with him as he left us and even stipulated a specific piece of music he wished to be played.
The song Don wanted to “play him out.”
On D-Day, we arrived at Don’s before the doctor and nurse who were to preside at his farewell. He met us at the door in a brilliant Hawaiian shirt and with big hugs. We each had time for special moments of shared love with him before he left us for final preparations in his bedroom. We gathered with him, and I was able to hold his hand while Barbara wrapped her arms around him. The four of us whispered final words of love to him as the Deep Purple song played softly. He gazed at us lovingly until life left him.
My gratitude to all who made his passing so gentle rather than horrifying is boundless. I felt only peace and love in his final moments, and will be eternally thankful that I could share them with him. May God bless and keep him and those who helped him.
Dying With Dignity Canada is immensely grateful to Sandra and the entire Kent family. Your powerful and moving insights will help countless others as they support their loved ones at end of life. Thank you.