Looking back…


My parents were born in Thunder Bay, a prominent shipping  and forestry town in Northwestern Ontario (named Port Arthur at the time). They grew up there, were married there, owned a family business, had three children and enjoyed their lives there. It is family lore that my favourite place to go as a child was the airport. My dad would pull the car up to the chain-link fence that separated the parking lot from the runway tarmac, so we could watch the planes take off. My mom swears she knew then that I would not spend my life in Thunder Bay, as they had.

In the spring of 2005, my dad was diagnosed with prostate cancer. He was 65. I had been living in Toronto for almost 14 years. My youngest brother lived in Winnipeg and my middle brother lived 10 minutes from my parents’ house in Thunder Bay.

One of the first appointments with the oncologist was set-up in such a way that my brother in Winnipeg and I could conference-call into the hospital and join the conversation. We wanted to hear the doctor’s prognosis first-hand, and ask our own questions, even if it was not possible for us to physically be there. It didn’t happen. The hospital was unable to connect us into the call. Upon reflection, almost seven years later, I realized that this was an indication of how my connection to the healthcare journey of my dad’s illness would unfold.

Sadly, my dad’s story is not uncommon. He was given a prognosis of three to five years. There were many doctors and many treatments over those years, but the cancer was too advanced for early-detection treatments. In the end, chemotherapy was the only option. But while the chemo did its job and attacked the cancer, it also attacked his heart. In October of 2009, he blacked out and fell down the stairs. On the holiday Monday of Thanksgiving weekend, I was on a plane to Thunder Bay to meet with my family, doctors, nurses and social workers to decide how to proceed with my
dad’s treatment, as he was not lucid enough to tell us himself.Looking_back_callout_1

The next four months would be full of grief, pain, confusion and guilt; I was completely unprepared to navigate the landscape of death from afar. When should I be in Thunder Bay? When should I go home? Should I bring my two-year-old son with me? How much would he remember of his dying grandfather’s last days? How much time could I take off work? How could I be part of the many decisions that needed to be made if I wasn’t in Thunder Bay? Would I be able to speak with the doctors from Toronto? The questions were overwhelming.

Looking back now, I am able to reflect on a number of themes that emerged during that time.

Communication Challenges and Emerging Patterns
It was my dad’s desire to die at home. I don’t recall those exact words being spoken by him, but we all knew he wanted to be at home. When he was first diagnosed, his healthcare team consisted of two oncologists and his family doctor. After the initial meeting with the doctors, I spoke to my parents on the phone, eager to know what happened. What was said? What is the prognosis? What happens next? Did they give you a timeframe? Somehow, when I hung up the phone at the end of our conversation, I felt better, as if it weren’t as bad as we thought. However, as the hours passed, I thought more and more about the information shared and what it meant. It wasn’t good. When I spoke with my dad, he was optimistic and hopeful. He was that kind of person and continued to maintain that outlook until he reached the end of his life. But, he also did not want to worry me, and I often wondered if I was getting the full story. My mom could provide more details and was very focused on supporting my dad, doing her best to remain hopeful, in spite of the gravity of a stage-4 cancer diagnosis.

A pattern of communication developed quite early in my dad’s cancer journey, and in how I experienced that journey from my home in Toronto. Immediately following an appointment or family meeting, I would call my parents to hear the outcome. My brother in Winnipeg would also call independently. We would then call each other, comparing our understanding of what we heard and determining what we thought it meant. Did we both interpret the news in the same way? Was this a positive development or something to cause immediate concern? Should we go home for a visit now or wait for a time when we could be of greater value? What should we do?

This pattern formed our communication throughout the first three to four years of my dad’s illness. I noticed that when my dad called with an update on an appointment or treatment, it was more-optimistic news. If my mom called, it usually meant bad news.

During the early years, the challenges were primarily related to gaining access to information about treatment progress, how the medical team assessed progress and how my dad was feeling in general. The only method for receiving information was secondhand, through my mom. She was my dad’s primary support and caregiver—recording information, keeping track of appointments and medication, updating family and friends. She later took on the responsibility of medical care in the home. I often had my own questions, which I would ask, but there was no infrastructure for accessing the healthcare practitioners directly. After the initial lost connection on the conference call, it was never attempted again.

When my dad’s health became critical in October, there were added pressures to the communication patterns that our family had organically developed over time. Previously, planning travel had a certain amount of flexibility, but now timing was essential. Phone calls almost always ended in wonder: did I need to book a flight as soon as I hung up the phone? Gauging the status of my dad’s health and the need to travel meant communication and decision-making were tightly intertwined.

Feelings of isolation, common during this period, were exacerbated by built-up frustration from an inability to hear information first-hand. Over time, I focused on the lack of communication—between myself and the healthcare team—as the primary cause of stress related to my dad’s illness. This primary focus framed the initial phase of research for this project, despite the existence of other stressors, which I am only now reflecting on.

Travel, Work and Financial Stress
As the cancer progressed into decline, and consequently towards end-of-life, the issue of distance became much more difficult to manage. I was lucky that the flight from Toronto to Thunder Bay was relatively short and that there were numerous flights each day by multiple airlines. However, despite accessible flight options, it was often expensive due to the need for immediacy. Flying back and forth would become a great financial strain on my own family; it also required accommodation by my employer. The expenses continued to build, draining our savings and resulting in a reliance on credit to facilitate the necessary travel.

I was working full-time in a fast-paced design studio, as an Associate Creative Director, and it was common for me to leave work on Friday, go straight to the airport, spend the weekend in Thunder Bay, then take the 6:30 a.m. flight back to Toronto on Monday morning. I would be at my office by 9:30 a.m. On these weekends, my husband would stay home with our son and juggle his own responsibilities with daycare pickups and drop-offs. I often referred to these trips as “sliding door” weekends (after the movie of the same name), as I travelled between two different worlds, each not fully acknowledging the existence of the other.

On trips where I took my son with me to Thunder Bay, I used vacation days or sick days, or negotiated to leave early or return late to work, so it was easier to manage flying with a toddler. More than once, I pushed the stroller up to the check-in counter in a panic, needing a kind attendant to escort us to the gate in a hurry so we wouldn’t miss the flight. The juggling of flight schedules, work schedules, childcare and finances—continually keeping watch for seat sales—became part of our everyday activities.

As a result, I often experienced high levels of anxiety in both locations. In Thunder Bay, I was worried about my responsibilities as a parent and wife, which included my obligations at work to ensure that I kept my job and did not put my family’s financial stability in jeopardy. In Toronto, I worried that I was not spending enough time in Thunder Bay, providing support to my parents as they experienced the dramatic decline that accompanies a life-limiting cancer. At times, it was a pressure cooker and, more than once, I paid a visit to my doctor—certain that I was about to have a heart attack. The grief associated with coming to terms with losing my father, coupled with the stress of maintaining employment and raising a toddler, created intense stress and anxiety. The addition of distance between my home and my parents’ home intensified everything.

Looking_back_callout_2Knowing to Ask
Reflecting back on that time, I never thought of seeking out local support groups in Toronto. When I visited my family doctor, she suggested that running would help alleviate the anxiety, which it did. But she didn’t make a suggestion for any support groups or services that might have been available in Toronto. And I did not think to ask.

Nor were there any options in Thunder Bay. The healthcare team—which now included a nurse, a social worker, a palliative care nurse, the oncologist, a physical therapist and a nephrologist—rarely engaged with me specifically, unless there was a family meeting or family conference. In those cases, I flew to Thunder Bay; we would gather in my dad’s room at the hospital to assess his condition and determine next steps to get him home, which is where he desired to be. After one meeting, the oncologist suggested that I look into a leave from work and indicated that Unemployment Insurance offered a program that would allow me to take time off when my dad was at end-of-life. Unfortunately, at that point, I was under too much stress to take on something new. I couldn’t begin to think about working through paperwork and applications to access the program. Only later did I learn about the Compassionate Care Benefit and wished I had known about it earlier.

End-of-Life at Home
In the end, my dad’s choice to be at home, surrounded by family, was honoured. He returned home by Christmas, which is where he stayed until he passed away in early February. To ensure that he was comfortable, and that his care would be manageable for my mom, many aspects of the healthcare environment came home with him, including the hospital bed that took centre stage in my parents’ bedroom. In the house that my parents had purchased right after they were married—the home that their children grew up in—is where my dad spent the last few weeks of his life. Surrounded by photos of his children and grandchildren—beautiful memories of a life well-lived. My mom took on the lion’s share of the caregiving responsibilities and was able to access support through the local Community Care Access Centre. A personal support worker came every couple of days and a palliative care nurse came every day, sometimes up to three times a day, during the last few weeks. She ensured that pain management was sufficient and instructed my mom on how to administer it at prescribed times during the day. She spent time alone with my dad, assessing his status, listening to him talk when he was able, and gently guiding him through what she knew was to come. She shared much-needed information with our family, explaining what we might witness with a human body shutting down—preparing us as best she could for what death might look like.

She also provided emotional support for me personally, as I struggled to say goodbye to my dad while negotiating, how to protect my son from experiencing the grief that had enveloped the house. She guided our family through the experience with care and compassion, and I don’t know what we would have done without her. I am not sure how anyone can ever prepare to witness the passing of a parent, but we were lucky enough to not have that experience in the halls of a hospital.

The Day After
After my dad passed away, the next few days were filled with planning and preparing for the funeral. These days were busy, and filled with family and friends that came together to celebrate his life. As difficult as the funeral was, the get-together afterwards was surprisingly comforting. Many people from the community came to pay their respects, but also show support to my family and share wonderful memories. Hearing stories about my dad’s spirit and joy for life was a welcomed change to the deep sorrow of waiting by a bedside, watching every breath to see if it would be the last one. These few days brought great comfort after a long journey, but then I got on a plane and flew back to Toronto.

Once I was home, I went right back to work. I had been away for weeks, used all of my vacation time and had responsibilities to catch up on. Back in Toronto, I felt like my entire world had changed overnight but no one around me knew about it. I was angry and had little concentration while at work. Over the previous four months I learned that people generally don’t want to talk about illness and dying. It’s uncomfortable and they don’t really know what to say. Once my dad had died, the silence was debilitating. Most people extended a sincere “sorry for your loss,” and I was thankful for that. But then they wanted to move on and not dwell on the past. No one said it, but I felt their overriding belief was that I should move on.

One day, an acquaintance called to say she knew how I felt, as she lost her mother a few years earlier. We talked for a while about the things only people who have lost a parent know about. It was a relief to speak with someone who understood what I was going through and knew how isolating it was to be surrounded by people who—though sorry for my loss—couldn’t really understand why I was not acting like myself.Looking_back_callout_3
My dad was my biggest supporter. He believed the best for me and the best of what I could be. When he died, I felt like his view of who I was, and my potential in the world, died with him. During this time, it never occurred to me to go to a support group or gain bereavement support; because he died in Thunder Bay, there was no connection to healthcare or mental-health support in Toronto. It wasn’t until two years later that my family doctor suggested I talk to someone to help me process his illness and his death. It has been five years this past February since he died, and I have only been back to Thunder Bay once—for the first anniversary of his passing. It’s just too hard.

We Were the Exception
My family was lucky enough to have had a full team of caring people, led by an exceptional nurse, to care for my father through the dying process. I’ve since come to understand that we were the exception and not the rule. Few patients receive the care that my dad did and few families receive the palliative support we did. As grateful as I am for that access, all efforts, across the trajectory of my dad’s illness, depended on my physical presence in Thunder Bay. That was the only way to be fully involved, informed and connected to his journey.

I don’t believe that my experience was unique. I suspect that more and more people follow opportunity—for school or work or relationships—and move away from where they grew up.

But the choice to live at a distance should not equate to forfeiting access to information when our
loved ones are diagnosed with a life-limiting illness. If technology can provide a platform for us to see what our friends had for lunch, why can we not design for the exchange of information and connection when it matters most?

This research honours my dad’s fight with cancer. It is my way of finding meaning in his loss and I hope to make a difference for other families where distance complicates the already-difficult end-of-life experience.

2 Responses to “Looking back…”

  1. Ursula Oikonen says:

    Congratulations Karen. Have been maneuvering through your websites and work, simply amazing research and thought provoking. A great deal of relatedness to anyone having walked this journey. I passed this along to Dave to read. Good luck with all your future endeavors.

    • Karen says:

      Thanks Ursula! So nice to read your message. I’ve had really positive feedback to the work as a whole and am working with Saint Elizabeth Healthcare to prototype an advance care planning tool that fosters communication between families where distance is a factor. Hope all is well – say hi to all in TBay!

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