As a caregiver, I was rarely invited to funerals. Still, I mourned deeply from a distance

This is a First Person column by Lana Cullis, who lives in Powell River, B.C. For more information about CBC’s First Person stories, see the FAQ.

The big hand on the clock above my desk jumped ahead another minute. My client was 15 minutes late for her employment counselling appointment, which was surprising since she was always on time and had never missed a session with me. 

While I waited, I looked up some more job postings to share with Rebecca (not her real name). My role as a vocational rehabilitation counsellor at a Vancouver community mental health team was to help patients find and keep work while living with a serious mental health diagnosis. This story is about my personal experience with grief in a professional setting, and much care has been taken to preserve ethical boundaries and privacy.

Rebecca had been referred to me a year earlier when she finally began to respond to treatment. 

After taking baby steps toward the job market, she felt ready to begin applications. She was 50 minutes late when my phone rang. 

I was informed by her case manager that Rebecca had died suddenly the night before. The details regarding her death were not yet known. He could only say the coroner was involved.

The shock of Rebecca’s death hit me hard as I was new to working with persons diagnosed with severe and persistent mental illness. I wasn’t prepared for the depth or the span of my grief, and at first, it was difficult to tease out why. After all, I had never seen Rebecca outside the one hour she spent in my office each week gathering her courage and the skills to seek and maintain employment. 

Professional ethics and policies guided the interactions between clients and service providers like me. We came from different circumstances, generations, religions, languages and cultures. We were not friends, although there was mutual kind regard and respect between us. So why did I feel the loss of her life so profoundly?

Later, we were told she died by suicide. As a care team staff that included occupational, vocational and recreational therapists, nurses and physicians, we participated in a formal case review process. We sought to understand the circumstances that had preceded her death and to determine if any preventative measures were missed.

Unbeknownst to her family, I also wrestled with questions of my own. 

My feelings were a kaleidoscope of sadness, anger, confusion and futility. There was much I would have liked to tell Rebecca’s family: how often and highly she spoke of them, how proud she was of their life choices and how much she looked forward to being an integral part of their lives in the future. But most importantly, how incredibly hard she had strived to get well. I refrained from reaching out to her family as Rebecca had not invited their participation during her sessions. To me, it felt more respectful not to intrude.

Doctors, nurses and counsellors can sometimes feel like outsiders. We are not likely to be invited to societal rituals that help with the grieving process. We do not hear the eulogies that honour the fullness of a life lived or what individuals mean to friends and loved ones. We do not witness the recollections shared at a celebration of life, the stories told at a wake or the lighthearted anecdotes exchanged while visiting after a formal funeral service.

It feels like sometimes families don’t understand how deeply carers might grieve when a patient dies. We are positioned uniquely in relationship to our clients: we hear the dark struggles, deep fears, hopeful desires and hard-won successes. We may see individuals more often than their families, especially when individuals are estranged from their families or live apart in different communities. 

I knew that my grief paled in comparison to the profound loss experienced by Rebecca’s family. I strongly believe that a family’s wishes ought to be honoured when a loved one dies. I do not believe families are being insensitive if we aren’t invited into this private moment. 

But I do wonder if intense grief robs families of the opportunity to consider how their loved one may have impacted those not within the inner circle of family and friends.

Rebecca’s premature death left me feeling vulnerable, sad and raw. Immediately after she died, I took advantage of the invitation to debrief with my supervisor. Then, when my grief persisted, I sought specialized counselling offered through my employee benefits program. The counselling helped, and yet, in practical terms, to function at work and continue serving persons on my caseload, I needed to refocus and set aside grief. It felt as if the work Rebecca and I accomplished together had vanished into a void and somehow become irrelevant.

Even now, many years later, remembering Rebecca’s determination yet loss of hope causes me to question my health trajectory. Like many of those I served, I wrestle with depression alongside chronic illness and question my faith, inner resolve and capacity to manage.

For example, how I will cope if my multiple sclerosis worsens or if my trust in the future flickers. And I wonder if my long-term health-care team members will experience loss when I die.

Over time, I learned to quietly mourn and privately celebrate the lives of those individuals who died during their recovery journeys. I placed symbolic poems or photos on my bulletin board to celebrate some aspect of their being and I kept a small candle in my office to light discreetly in remembrance. I also learned to accept those rare invitations that were extended by family to participate in memorial activities. 

On one occasion, after a client had died, the link to an online book of remembrance was shared with staff at the community mental health team. I remember feeling honoured to read the posts written by family, friends and co-workers and I valued the opportunity to offer my own words of condolence.

When I do die, I hope my family will remember to invite my healthcare providers to my funeral, and I hope my care team will risk sharing their unique perspectives with my family.

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